BASELINE 15 by BASELINE -hiv.co.uk

SAY: Have Yours and Protect NHS Services PUG: Patient User Groups Give You a Voice HEP: Introducing our New 16-Page Section Winter 2013: Issue 15

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23 May 2013 DoMinion THEaTRE TEN WEST END SHOWS COMPETE FOR THE COVETED TITLE OF WEST END EUROVISION CHAMPION TICKETS ON SALE NOW www.TickETMasTER.co.uk A TheATReMAD PRODUCTION IN AID OF The MAKe A DIFFeReNCe TRUST The Make A Difference Trust is registered in England and Wales as a charitable company limited by guarantee Company No 6546586 Charity Registration No 1124014

FOR MORE INFORMATION VISIT MADTRUST.ORG.UK @MADTRUST The MAKe A DIFFeReNCe TRUST

Protecting HIV services and the role people living with HIV can play in shaping services are key themes running through this issue. At the end of 2012 the British HIV Association published The BHIVA Standards of Care for People Living with HIV; a blueprint for the minimum standard of care you should expect regardless of you living in London, Leeds or Luton. You’ll find our summary of them on page 28 or see them in full at www.bhiva.org In our lead article Sarah Radcliffe, Policy Officer at NAT walks us through the myriad of opportunities that will exist in the new NHS to help us have our voices heard; from Healthwatch to patient user groups, Sarah looks at how we can best influence local and central government and reminds us that the voice of local residents can be powerful. David Randolph asks if the proactive patient is near extinction and makes the case for setting up a patient user group at your clinic. Training and support mechanisms for taking part in the new engagement structures such as Healthwatch have recently be announced (see UK news). We’re keen to better understand how actively engaged you currently feel with your clinical care and what would help you to be better engaged. From this month we are running a survey looking at involvement. Please complete it at www.baseline-hiv.co.uk/hivcare Finally, a big thank you this issue to Joel Korn and Andria Efthimiou Mordaunt for covering Grindr and OCCUPY in their own inimitable styles and to David Rowlands for leading on the survey development and our new 16-page hepatitis section which starts on page 44.

Contact the team: Editor: Robert Fieldhouse robert@baseline-hiv.co.uk Associate Editor: Jane Phillips editor@baseline-hiv.co.uk News Editor: Chris O’Connor chris@baseline-hiv.co.uk

Winter 2013

Editorial Administrator: Tom Matthews Development Manager & Photographer: David Rowlands david@baseline-hiv.co.uk Proof reader / Social Networking Michael Duggan / Rebecca Gibson Designer: Gareth Williams Intern: Daniel Jon

In this issue 04 bylines 06 letters 08 headline: uk news 12 myline: David Randolph 16 have your voice heard in the new NHS 20 Ffena conference report 24 myline: Andria EfthimiouMordaunt 26 the AALPHI study 28 BHIVA launch standards for HIV care 32 GP HIV service model 34 oasis at ammerdown 36 headline: global news 40 headline: healthy living news 42 hotline 44 hepatitis section 62 i-base Q and A 64 antenatal point of care CD4 testing 68 myline: Joel Korn 70 NLTSG 20th birthday celebrations 72 BASELINE congratulates 74 disclosing your status to the bank manager 76 Ian Govendir, AIDS orphan interview 80 finelines and numbers

For magazine and web advertising please contact david@baseline-hiv.co.uk Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in BASELINE is not to be taken as any indication of health, HIV status or lifestyle.

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Deadlines for the next issue Copy 03/05/2013 Advertising 10/05/2013

Robert Fieldhouse has been working and

Martha Le Prevost and Linda McDonald

volunteering in the HIV sector since 1997.

have worked in the HIV sector for many years as HIV nurse specialists and in the voluntary sector. They have been working on AALPHI for the last year and a half and between them see all of the participants across the country.

Jane

Phillips spends her time Tweeting, Facebooking and fiddling about with words. Looking forward to another exciting year growing with BASELINE. CHECK us out on Twitter @ baselinetweet and on Facebook by joining our group BASELINE.

Tom Matthews set up BP Leeds in the 1980s and is now a trustee of ABplus in Birmingham and the National Long-Term Survivors Group

Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicine. Busily attending medical conferences and scouting for the latest stories.

David Rowlands has extensive copy writing, photography, design and brand development experience across a range of sectors.

Chris Morgan is the man behind Compass, the gay financial advisers and Unusual Risks, the HIV financial advisers. He has been at the forefont of HIV financial issues for over a decade and co-wrote the HIV and insurance guidelines that the life assurance industry uses today.

Andria Efthimiou Mordaunt has an MSc in Social Policy from the LSE. John Mordaunt was her life partner ‘til his death due to AIDS in 1995. 17 months later, she set up a charity in his name, which has advocated for the health and human rights of drugs users, beginning the lobbying of the UN on the failure of the global ‘war on drugs.’

Rebecca McDowall is Treatment Information Officer/Distribution Manager at HIV i-Base. Sarah Radcliffe is Senior Policy and Campaigns Officer at NAT.

Joel Korn is a member of the Support and David Randolph was involved in setting up the first dedicated HIV volunteer service for at St Stephen’s, later Chelsea and Westminster Hospital. He directed the first UK AIDS walk, Walk for Life and six further Walk for Life events across the UK and Europe. David obtained FibroScan, the first noninvasive liver scanner to the UK as Director of HIV Fundraising at London’s Royal Free Hospital and is currently Project Director on an ongoing HBV collaborative initiative with Dr. Sanjay Bhagani and Professor Tony Wilson of Mbarara Regional Referral Hospital in Uganda. Winter 2013

Development Worker Team at River House Trust. He is a trained counselor (MBACP individual and group work) and is also a facilitator of Living Well’s Positive Self-Management Programme.

Maurice

Greenham was diagnosed with HIV in 1984; AIDS in 1994. He’s currently, a hard working Open University student, church organist and serving trustee of several HIV and LGBT organisations. Since July 2009 Maurice has been Secretary of the National Long Term Survivors Group. www.baseline-hiv.co.uk

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Dear Robert I hope you’re well. Thanks for the latest BASELINE. I enjoyed reading it. However, I have to say how saddened I was by the note on page 66 that the number of new infections amongst gay and bi men had reached 3010, the highest number ever. Most of my HIV work is outside the UK so I’m a bit “out of it” on the local situation. Yet as a gay man I am saddened to see so many men infecting and being infected. Also I hate to hear of so many late presenters. Late presentation can be such a trauma to the person’s physical and mental health, makes more infections possible, and it’s so costly. And, at the same time, any discussions I’ve had recently on the matter, have left me feeling very frustrated. Mainly I’ve got the message to back off, that it’s demonising of gay men’s sexuality to raise alarm, that alarm is even passé. Here’s the Glasgow HIV conference data that worried me the most: In a July survey of almost 1000 HIV negative gay men in France only 30% had ever heard of PrEP, and only 12% were well informed. 17.5% were ready to use PrEP if it was 50% effective, 50% would use it if it was greater than 90% effective. The study concludes that much more information is needed in the community about PrEP. I am quite sure if a study like that was done in, say, 1995 that more than 1/3 of gay men would know about best methods of safer sex and more than half would grab at a silver bullet to keep them from getting infected. I know that HIV is no longer a death sentence, yet it’s no fun. And hepatitis infection isn’t either. I wish we could aim to have really good healthy sex in the context of infectiousness rather than somehow minimising infectiousness. We’re in a curious situation: more than ever we have tools to successfully prevent and treat HIV, yet we face a growing body of evidence that says these tools are not reaching, or being used by, those most in need, while related mental and social health issues are downplayed or ignored with core services cutback. For me this has international aspects, too, because we’re dealing with the same type of problem in my work in Central and South East Europe. Best, Ben Collins International HIV Partnerships www.ihivp.org Winter 2013

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How involved are you in your HIV Care? BASELINE is researching how people living with HIV are involved in treatment decisions and whether treatment is tailored to meet your needs. Our anonymous online survey will just take 10 minutes of your time. Visit www.baseline-hiv.co.uk/hivcare This survey was developed by Fieldhouse Consulting Ltd (publisher of BASELINE) & sponsored by a pharmaceutical company.

news: UK No Reduction in Undiagnosed Pool of MSM Over Ten Years GPs Conference - Engaging with HIV

The increasing role general practitioners and primary care teams have in the diagnosis, treatment and care of their HIV positive patients is still evolving. Some health commissioners have set targets for 70-80% of patients at HIV clinics to register with a GP. Up to a quarter of people living with HIV in the UK are unaware of their HIV status and the role of the GP in testing and diagnoses is being ramped up. The Royal College of General Practitioners (RCGP) and the British HIV Association (BHIVA) held a one-day conference at the end of January to engage general practice teams in these issues. According to Anthony Nardone of the Health Protection Agency, reducing late HIV diagnosis has been identified by recent NICE recommendations and the House of Lords report. In the new Public Health Outcomes Framework late HIV diagnoses is one of the indicator conditions. Nardone reports that in a 2012 audit very few HIV tests were carried out by GP’s. However people who tested positive elsewhere did have the opportunity to be tested in primary care - 76 per cent of people diagnosed in 2008 had been seen in primary care in the previous year. Philippa Matthews, a GP from London, looked at communication strategies -avoiding making assumptions about risk, She also reported the results from a GP HIV training programme in Haringey, London, which saw a doubling of tests being done in GP practices after the training. Philippa also reported one 70 year old who had been diagnosed HIV positive at her practice. 08

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New HIV diagnoses rates have stubbornly flat lined for men who have sex with men (MSM), despite nearly a fourfold increase in testing and an increase from 69% to 80% in ARV uptake (Test and Treat), according to a new way of interpreting data by the Health Protection Agency and the Medical Research Council which was published recently in The Lancet. The report, for England and Wales, looked at the years 2001 - 2010 and concluded that improved frequency of HIV testing and starting ARVs at higher CD4 counts were needed to reduce infection rates. Factors in the increases were cited as, unsafe sexual behaviour; a result of ‘treatment optimism’ and insufficient frequency of HIV testing. In 2010 38% of new MSM infections were not detected until they were below the recommended threshold for treatment - CD4 count 350, although this has improved from 52% in 2001. The new data show that the period of time from infection to diagnoses in MSM has decreased from 4 years in 2001 to 3.2 years in 2010. In the same period, the number of men diagnosed with a CD4 count higher than the treatment threshold of CD4 350 has gone from 48% to 65%. The estimated number of total undiagnosed HIV infections among MSM in 2001 was 7370 and in 2010 it was thought to be 7690. Sexual health clinics are where 93% of MSM receive their HIV diagnosis and there has been an increased effort to encourage HIV testing in these clinics, however this ‘might not have sufficiently improved coverage of testing across the MSM population confirmed by the ‘modest’ reduction in time to diagnosis to 3.2 years,’ says the report. http://tinyurl.com/b38mqwl +++-

Winter 2013

Chris O’Connor

iStayHealthy the free mobile health app Launched in early 2011 with more than 3,000 downloads to date • Record and review essential blood results (CD4/Viral Load) • Manage and record current medications (anti-retroviral as well as non-HIV meds) • Provide reminders to take medications regularly and on time

A tool for people living with HIV available for Apple and Android mobile users. blogs.poz.com/iStayHealthy www.baseline-hiv.co.uk

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Relax on a Weekend Away NLTSG and BASELINE invite you to spend a weekend with us at KPS Trebullom, a beautiful, tranquil 8 bedroom 18th Century Grade 2 listed stone farmhouse set in 11 acres of farmland a short distance from Bodmin in Cornwall.

. . .. . . . .

For £160, you will get The opportunity to meet new people 2 night’s accommodation in a luxurious twin room Welcome dinner on Friday evening Breakfast, lunch and dinner on Saturday Breakfast and Sunday Roast Pick up from Bodmin Parkway railway station or car share options available Group trip on Saturday. Workshop led by BASELINE columnist Joel Korn Complementary therapies are available at an additional £25 cost per therapy ++++ ++ 10

Friday 7 until Sunday 9 June 2013 Discounted and fully funded places Are you an existing member of NLTSG or would you like to become a member? Membership qualifies you for a half price place. You pay just £80. NLTSG members can also apply to NLTSG’s means tested 1992 Fund to pay some or all of the remaining £80 cost if you can’t afford it.

For more information contact Robert Fieldhouse at robertfieldhouse@hotmail.com or call 0121 449 4405. We hope to organise car shares from locations across the UK. NLTSG is able to offer £25 towards the cost of public transportation. +++-

Autumn 2012 National Long Term Survivors Group is a Registered Charity 1040586

Chris O’Connor

news: UK Cut Services and Watch STIs Rise, Warn Brook and FPA

Increases in sexually transmitted infections (STIs) because of government cuts to sexual health services, are likely warns a report from two leading UK charities. Brook and The Family Planning Association (FPA) commissioned report, Unprotected Nation, suggests the cuts could result in the public having to pay out millions more to deal with over 90,000 more STI cases. The report says the NHS will have to deal with a 22,000 increase in unwanted pregnancies. The FPA said: “With clear evidence NHS efficiency savings are already undermining the quality of contraception services available today, through postcode and age based restrictions, limited services offered by PCTs and changes to commissioning structures, the Unprotected Nation report predicts a bleak future resulting from the continuation of these restrictions across the country as commissioning structures change and budgets are cut.” The report’s key findings include claims there could be: * £314m added burden to NHS costs due to the possible rise in STI’s, excluding HIV, of £298.6 million in additional NHS health costs between – over the period 2013 and 2020. *An extra 91,000 STIs per year by 2020, due to increased restrictions, fragmentation of services and reductions in the effectiveness of education and awareness-raising programmes. Of these, 76,840 cases are expected to be chlamydia an additional cumulative burden of £314 million on the NHS by 2020. “The report makes clear that at a time when the NHS is struggling to make £20 billion of efficiency savings before 2015, restricting contraception and sexual health services is not only a false economy but has a real impact on people’s health, lives and families,” the sexual health charity said. Dr. Audrey Simpson, OBE, Acting Chief Executive, FPA, said; “The wheels of this crisis are firmly in motion. Investment in sexual health saves money, but if national and local government ignore the warnings and continue stripping away services, advice and information, the bleak predictions in this report will come true.” www.baseline-hiv.co.uk

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BASELINE Launches Patient Involvement Survey for PLWHIV This issue of BASELINE magazine is packed with information and opinion on the National Health Service post the Health and Social Care Act (2012). At BASELINE we are interested to know more about how involved you feel you are in your HIV care and what, if anything would help you to be better engaged. This month we are hosting a survey looking at exactly that and the impact of treatment on day-to-day living. Right now there’s lots of discussion about the role of the patient in the new NHS, about our right to have our voice heard, to be central to decisions which affect our care. We are hoping to present the findings to you in the magazine over the summer and at HIV meetings later this year. Please complete the survey to let us know your experience. You’ll find the survey at www-baseline-hiv.co.uk /hivcare 11

14th EUROPEAN AIDS CONFERENCE OCTOBER 16 - 19, 2013 BRUSSELS · BELGIUM Conference Organiser European AIDS Clinical Society (EACS) Hôpital Pitié-Salpêtrière · Pavillon Laveran EACS Office 47, boulevard de l’Hôpital 75651 Paris Cédex 13 · France Phone: +33-1-44241796 Email: info@eacsparis.org www.europeanaidsclinicalsociety.org

Conference Secretariat EACS Conference Secretariat c/o K.I.T. Group GmbH Association & Conference Management Kurfürstendamm 71 · 10709 Berlin · Germany Phone: +49-30-24603-0 Fax: +49-30-24603-200 Email: info@eacs-conference2013.com www.kit-group.org

Conference Co-Chairs Nathan Clumeck Manuel Battegay (EACS President – elect)

Conference Venue SQUARE - BRUSSELS MEETING CENTRE Glass Entrance Rue Mont des Arts 1000 Brussels Belgium www.square-brussels.com

WWW.EACS-CONFERENCE2013.COM

Chris O’Connor

news: UK Training and Support Tools for Healthwatch Involvement Now Available

Local health and social care is changing rapidly. If people want to participate in shaping care services and hold them to account, we will need to make ourselves known to the new organisations that are taking charge. We need to ‘get on the map’ and many of us may need support to do so.  National Voices www.nationalvoices.org.uk is the national coalition of health and social care charities in England. They work together to strengthen the voice of patients, service users, carers, their families and the voluntary organisations that work for them. They have more than 150 members with 130 charity members and 20 professional and associate members. Their broad membership, rooted in people’s experience, represents millions of people, and covers a diverse range of health conditions and communities. H-CI is a new project of National Voices, Regional Voices, CSV and Navca. Through their voluntary sector networks they hope to reach 30,000 groups across the country with a message for them to pass on to local people – to get involved, Get on the Map.  The HCI project will help to inform and educate people on the opportunities to participate locally, including the establishment of new local Healthwatch organisations from April 2013.  It offers you the chance to identify yourself as a potential participants by signing up to get on the map of involvement which will be made available to Healthwatch and other organisations.  To help you understand the changes in local health and social care, and the opportunities to get involved, H-CI offers: a website with resources and a place to sign up for the Map: www.healthwatch-ci.co.uk regional workshops to provide people with the skills and knowledge to build their confidence to get involved in a way that best suits them  free training opportunities on involvement, lay leadership, roles and responsibilities and equalities  For any queries please email Don with ‘HCI’ in the subject line: don.redding@nationalvoices.org.uk

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www.baseline-hiv.co.uk

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In Brief…in Brief… Unusual Risks, insurer, Chris Morgan has urged people diagnosed as HIV positive to check the terms and conditions of their protection contracts before cancelling them as they may still be covered. A survey of 123 people found that a majority of income protection, critical illness and private medical insurance policies do not cover people in the event of HIV….. However, the majority of life assurance and life insurance plans do, in fact, cover people in the event of a HIV diagnosis.” A date for this year’s ‘Walk for Life’ HIV fundraiser has been set for Sunday 16th June. Organisers Terrence Higgins Trust are calling for ideas for this years theme on their website. The so called ‘cool gene’ test which claimed to be able to detect a gene mutation that meant the carrier had some immunity to HIV - was advertised on some dating sites in the UK has now been withdrawn. One of those who protested, Matthew Hodson, of the gay men’s health charity GMFA, who said: ‘With thousands of UK gay men becoming infected with HIV each year, it seems particularly irresponsible to be suggesting to gay men that they may be immune.’ 13

Is The Proactive Patient Nearing Extinction? We, as patients, need to recognise what is happening. The excellent care that we were offered just a little more than two to three years ago is being slowly diluted and re-structured once again to be what politicians refer to as ‘robust, more cost effective and more fit for purpose NHS.’ They say it is better for you and me but is it? And exactly whose purpose do they mean ‘fit for’? The history of HIV/AIDS, indeed the tremendous record made in fields of patient care, drug research and general medical practices in HIV/AIDS has, in part, been brought about by patient activists. In the beginning, we had GRID. On the second day we had AIDS. On the third day we had ACT UP. 1987 saw the slogan, Silence = Death. For a long time after this, the collaboration between patients, clinicians and politicians moved HIV/AIDS research, care and treatment along like a raging torrent. Every other day, patients were forming support groups. Services like HIV volunteers, dropin centres for food, advice and counselling and HIV patient transport were established. Hospitals created dedicated wards and then, while the bands of NHS managers gasped in horror, charity funded dedicated ward kitchens appeared. Treatment went from super experimental doses of AZT that would kill a horse to the wonder drugs that we have now. This has happened on a time scale not witnessed in any other area of medical treatment. In 1989, a very loud group of people with even louder bullhorns gathered outside the old St Stephen’s Hospital on Fulham Road and shouted “….give him AZT or he’ll die!” This group of people was organised by a branch of Actor’s Equity to 14

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help save an American actor, Douglas (Boys in the Band) Lambert. He got the drug but he died. Nevertheless, the protest movement was born.

‘Unless we get re-involved in our care we will lose more and more of the services on which we have come to depend.’ Then came the protest that AZT kills. For years after, there was always that angry voice pushing things along and hopefully making things better. Patients began to do the unthinkable and actually question their doctor about medication and treatment. Patients became empowered. All this did not go unnoticed by the rest of the NHS services. At times there was even a general resentment that HIV/AIDS was taking too prominent position within the NHS. Meanwhile, the gigantic strides in research and increasingly successful use of these wonder drugs in the early 90s saw AIDS-related deaths decline year on year. Patient User Groups were involved in getting dedicated pharmacies into some clinics. Today it is quite hard to imagine the stigma and embarrassment of going to the main pharmacy in a hospital to get your ARV prescription filled. Because so much had been done so well and so many patients were better than before, laurel wreaths were placed on the heads of the ‘great and the good’ - the managers who had created all this and we got infected with complacency. Unfortunately, the NHS non-medical management bows to politically driven, financial concerns, in spite of the objections of medical +++-

Winter 2013

David Randolph

practitioners, when they should apply this new model of patient care to other medical specialities and raise them to an equal level of excellence. A significant area in which this model could be applied is in the treatment of hepatitis C. It must be stressed that the activism that created this model was driven by a desire to work in cooperation with medical personnel. We now need to return to this cooperative relationship, rather than continue to allow non-medical NHS management to make unilateral decisions. Why must politicians still have to constantly debate issues of patient care in the House of Commons and argue back and forth like a perpetual scoreless game of ping-pong? They say decisions are made based on costs and improvement to patient services and care. These people who have made these decisions that have huge implications to patient care are generally NHS self-interested upper management, careerist pen pushers who haven’t any direct knowledge of HIV or you and me; they have their eyes fixed on the targets and enjoy inflated salaries and very generous pensions. Of course, then they decide to get rid of targets. We have all seen the insanity of taking away all but acute care for patients from highly efficient and specialist clinics and some have suffered as a result. Thrusting these same patients onto General Practitioners, some of whom have almost no better knowledge of HIV pharmacology than the patient they are supposed to treat is a situation with potentially lethal consequences. Patients don’t experience the holistic approach to their care that they used to. Now, they must see their GP for any symptoms that are not directly related to HIV, even if these symptoms are a side effect of their antiretrovirals. If you are a patient you, like me, you know that our entire lives are HIV-related. That is just one thing that makes HIV different from other conditions. If GPs are not aware of the issues surrounding HIV, then they are www.baseline-hiv.co.uk

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not able to give comprehensive care to the patient. Most people with HIV are now working; they are not on benefits. This is something that the government has been encouraging, of course. The cutbacks in benefits are clear evidence of this encouragement. A patient now must make two appointments – one for his HIV specialist and one for his GP; this means the patient must miss work twice. This fact does not enhance his employability. This is a situation that has arisen as a direct result of political interference in NHS policies. These decisions have been made based on short term knee jerk, political reactions to financial considerations, exactly the same type of decisionmaking that has caused the death of upwards of 1,200 people in the UK. Three hundred of these people are estimated to have died at MidStaffordshire NHS Trust. What do we do now? Are we to passively sit on our hands in the clinic and treat getting our antiretroviral drugs as if we were in a petrol station, watching and doing nothing? Or can we meaningfully play a role in determining the standard of care we receive in clinic? A Patient User Group is not going to perform miracles overnight, nor is it all about protests and confrontation. It is about re-establishing involvement and cooperation with your care and those that care for you and making it work better for all concerned. Your clinicians need your feedback. Unless we get re-involved in our care we will lose more and more of the services on which we have come to depend. These are services that have changed our lives and have kept us alive. Dedicated HIV clinicians are not apathetic so why should you be? Pull your finger out and join a Patient User Group near you. It’s true: SILENCE=DEATH. Thank you Act Up ++

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How the Health and Social Care Act will shape your services – and how you can shape them too! . . . . .

The NHS is on the verge of monumental change HIV will have to compete for funding with a range of other conditions A better range of opportunities now exist to have your voice heard than ever before Patient needs are a key focus: use your voice to get what you need Your voice as a local resident and patient can be powerful

The NHS is currently in a state of unprecedented change. This process is occurring at a time of austerity, the like of which we have never seen before. The reforms can be hard to navigate, even by people who are closely involved and it can seem like things are changing from day to day. Thanks to the success of antiretroviral therapy people living with HIV are a growing and ageing population. But with age comes the possibility of more complex health needs. There has never been a more important time for HIV to be part of the agenda, for the patient voice to be heard across a range of forums if HIV is to compete successfully for funding with a range of other health conditions. Within the landscape of the new NHS there are many mechanisms you can use to have your voice heard. This article will guide you through the options you have to become better engaged. The Health and Social Care Bill travelled through Parliament amid controversy and substantial levels of public dissent. There were particular concerns about the role of competition and the use of private companies in the provision of health services, and how this might change the 16

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character of the NHS as a public service. Following fierce debate, a ‘pause’ and a ‘listening exercise’, the Bill became an Act in March 2012 and will be implemented this year.

‘It is really important that people living with HIV take these opportunities and keep HIV on the agenda as the new system beds down, so that we don’t lose our current high quality services.’ Fundamentally, the Act changes how NHS services will be ‘commissioned’ - that is, planned and purchased – in England. This change of structures and rules for commissioning will in turn have an impact on how services are provided and by whom (including the potential for a greater role for community-based services and private companies). The new system gives a lot more power to local decision-makers to plan health and social care services for their own areas, with much less top-down direction from the Government. This has created uncertainty about how (or if ) HIV and sexual health will feature in the priorities of local commissioners. The extremely brisk pace of implementation of the Act has also contributed to anxiety about whether the right plans will be in place for HIV when the new system kicks in on 1 April 2013. Amongst the confusion, however, there are opportunities in the new system for people living with and affected by HIV to influence

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Winter 2013

Sarah Radcliffe these decisions more directly than ever before. The importance of patient voice is a major feature of the rhetoric around the Act (including appropriation of the slogan “no decision about me without me”). But this has been backed up with a range of mechanisms to help you have your say about the services you need. It is really important that people living with HIV take these opportunities and keep HIV on the agenda as the new system beds down, so that we don’t lose our current high quality services. The basics Primary Care Trusts (PCTs), the bodies previously responsible for commissioning most services, will be abolished from 1 April. In their place will be new GP-led bodies called Clinical Commissioning Groups (CCGs), who will be responsible for planning and purchasing the majority of NHS hospital services (‘secondary care’) in their local area. HIV services will not be commissioned by CCGs, however. As a condition which affects a comparatively small number of people, but requires specialist expertise and medication, HIV services will be the responsibility of a central body, the NHS Commissioning Board. This is to help ensure quality and consistency in HIV services and equality of access to patients across England. Sexual health services (excluding HIV) will now be commissioned by Local Authorities, who have been given responsibility for public health. HIV prevention work (e.g. local campaigns, condom provision) also comes under the Local Authority public health banner. HIV services The NHS Commissioning Board will commission HIV, alongside a range of other rare and specialised health conditions. The NHS Commissioning Board will also be responsible for primary care (GPs, dentists and pharmacists) as well as healthcare in prisons, immigration removal www.baseline-hiv.co.uk

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centres and other detention settings. The commissioning plans which the NHS Commissioning Board makes for these specialised services will be guided by 64 Clinical Reference Groups (CRGs). CRGs are panels of experts in specific health areas including doctors, commissioners and patient representatives. The HIV CRG is chaired by Dr Simon Barton, an HIV consultant from Chelsea and Westminster Hospital in London. It has two patient representatives, Paul Clift and Memory Sachikonye, both members of UKCAB (the UK Community Advisory Board) www.ukcab.net and is in the process of recruiting two more. NAT also currently sits on the panel. The CRGs have developed ‘service specifications’ for the conditions they represent. These outline the ‘must haves’ for anyone providing the service, and what the patient should be able to expect. These will form the basis of all service contracts across England. The HIV CRG have released draft service specifications for both adult and paediatric HIV services, based on current practice, these were open for public consultation until January 25 2013. NAT submitted a response to the consultation. You can view it at our website www.nat.org.uk Local connections At first glance, centralised service planning by the NHS Commissioning Board doesn’t seem a natural fit with a system built on increased local responsibility. However, the NHS Commissioning Board structure is more horizontal than the name implies. There will be 27 Area Teams covering the whole of England, commissioning GPs, dentists, pharmacy and optical services for local communities. 10 of these Area Teams will be responsible for specialised services, including HIV. They will form a hub for their region and liaise with local decision makers in their patch about their plans for HIV service provision. The key actors they will need to work with in any local area are the CCG(s), local authority, ++

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Health and Wellbeing Board and Healthwatch. These bodies are at the heart of the new system, and represent key opportunities for influence by people who care about HIV services in their area. Join the conversation The new Health and Wellbeing Boards will be the hub for all health and social care decisionmaking for your local area. The membership of the boards will include CCGs representatives, at least one local councilor, the local Directors of Adult Social Services and Children Services and the Director of Public Health for the area. Health and Wellbeing Boards will also have at least one representative of the local Healthwatch www.healthwatch.co.uk Healthwatch is the organisation representing the voice of patients, carers and the local public in England. It will replace the current Local Involvement Networks (LINKs). Anyone can join their local Healthwatch, which should be making a special effort to ensure they reflect the diversity of views and experiences in their local community. Even if you don’t become an active member of your local Healthwatch, you can get in touch to ask how they are representing the needs of people living with HIV. Health and Wellbeing Boards can also appoint additional members of their choosing. For example, they may have representatives of the local police force. There could also be a role for local voluntary organisations. Ask your local HIV organisation if they have considered applying for membership. Even if they aren’t able to join, they can attend the public meetings of the Health and Wellbeing Board and try to influence its work by providing input (see below) and getting in touch with key members such as local councillors and Healthwatch. Your local clinic can do the same. Or you can also do this as an individual! Strategic thinking The main reason the Health and Wellbeing 18

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Board is so important to your local services is it is the forum in which patient needs are identified and strategies for meeting them are developed. Once agreed, these strategies will set the agenda for all the commissioning decisions made for your area, whether by CCGs, the NHS Commissioning Board or Local Authorities.

‘There has never been a more important time for the patient voice to be heard.’ There are two key documents to be aware of: the Joint Strategic Needs Assessment (JSNA) and the Joint Health and Wellbeing Strategy (JHWS). The JSNA is a process of looking at the characteristics of the local community and what health, social care and public health needs exist in the area. The JHWS sets out which of these needs are to be prioritised when planning services. The Health and Wellbeing Board will sign off all commissioning plans made by the Local Authority and CCGs, having checked that these reflect the priorities outlined in the JHWS. As someone who uses HIV services and cares about service provision in your local area, you can ask your Health and Wellbeing Board if and how HIV is being considered in the JSNA, and whether it will be part of the JHWS. You may also have evidence that you want to submit about the needs of people living with HIV in your area, current service provision and how it should be maintained or improved. You can do this by contacting your local councillor or local Healthwatch. Sexual politics A concern shared by many people who care about HIV and sexual health services is the potential that these services could become negatively politicised within Local Authorities, or ignored, as ‘unpopular issues.’

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Sarah Radcliffe

There are also questions about how ready some Local Authorities are to take on responsibility for sexual health, given the pace of change and their lack of experience with clinical services. There is a risk that some of the effective ways of working we have taken for granted (e.g. clear care pathways from local sexual health clinics to specialist HIV care) might be lost. One really simple thing that you can do to help address this is to get in touch with your local councillor to ask about sexual health and HIV services in your local area – for example, will the Local Authority prioritise HIV prevention? What are their plans for HIV testing? How do they plan to meet the social care needs of people living with HIV? One advantage of the added political dimension to public health is that your voice as a resident as well as a patient can be very powerful. You could also encourage others in your clinic or local service to ask questions and help keep HIV on the local agenda. Back in the clinic With all the new structures it is also important not to overlook more familiar forms of PPE (patient and public engagement) in your clinic, such as speaking to patient reps, responding to questionnaires about your patient experience and engaging in any consultation on change to your service. The NHS Commissioning Board Teams who are responsible for HIV services will have to operate within a fixed budget which is based on previous years’ expenditure. Of course, there continue to be new HIV diagnoses each year and people are thankfully living longer – so there will be increasing pressure on this limited budget. While the HIV service specification ensures that the must haves of your treatment and care are met, you may find that your clinic looks at new ways of providing it, to try to be more cost efficient. This is another area where you should have your say. The primacy of the doctor-patient www.baseline-hiv.co.uk

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relationship remains paramount and the NHS is keen for patients to be actively involved in their care, including importantly, in decision making around clinical care. Many HIV clinics have established patient user groups so that people living with HIV can come together to share feedback and ideas to improve the services the clinic provides. A network called Forum-link www.forum-link.org includes HIV patient groups. Their mission is to provide a coordinated voice for HIV patient groups across the UK. Forum-link can provide any new patient group with guidance on best practice such as developing group policies and procedures, managing finances and raising funds. If you have an HIV service user or patient group and would like to join the Forumlink project or you would like help with setting up a new group email: paul.decle@forum-link.org or telephone; 020 7738 0258. Such patient groups can have a key influence at a local level and can provide insightful local knowledge to the four patient representatives who sit on the HIV CRG. The opportunity to shape HIV services of the future really lies in our hands.

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What you can do Get in touch with your local Healthwatch Write to your Local Councilor Find out when your local Health and Wellbeing Board meets and attend a meeting Talk to your clinic representative about how you can ensure the needs of people living with HIV are heard by decision makers Join or set up a patient group at your clinic

Supported through an unrestricted medical educational grant by Gilead Sciences UK. Gilead had no editorial control of this article.

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‘Let’s turn those kitchen counters into offices.’ Award-Nominated African Women Activists Meet in London

Seventy vibrant, enthusiastic and insightful African women living with or affected by HIV met one Saturday morning last September. Ffena is a project of the African Health Policy Network that provides African people living with and affected by HIV in the UK with training, support and a platform from which to share their views and make their voices heard in order that they can influence policies that affect their lives. The network currently has 233 members, from across the UK, and continues to grow.

“Today is not the end it is very much the beginning of the journey. Continue to be agents of change in your regions. We need the voice of Ffena amplified.” Ffena is a Luganda word meaning ‘[we] all together’. Though a national project, the network also operates at the local level, through a number of Ffena satellite groups. These semi-independent and self-running groups create opportunities for Ffena members to regularly meet, access training, and take action together. The conference, supported by an educational grant from global biopharmaceutical company AbbVie was designated a women-led and centred space, provided an opportunity to discuss issues which are all too often given insufficient attention by service providers and policy makers alike. Opening the meeting, Conference Chair Tendai Ndanga told delegates; ‘As women we are going to fight, we are mums, 20

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grandmothers, nieces. Wherever there’s a woman there’s a voice.’ HIV Treatment and Care The HIV treatment and care component of the meeting was delivered by Professor Jane Anderson and Professor Margaret Johnson. Professor Anderson told attendees that there remains a lack of women-specific clinical trial data, that not enough women enrol in clinical trials. Some studies have shown that women tend to stop their HIV medicines more often than men with some research suggesting that women are less adherent to treatment than men. The particular needs of women are reflected in the fact that there is a range of specific HIV treatment guidelines for women. Professor Anderson stressed the importance of women taking an active part in discussions around treatment with their clinician to help identify any specific needs. Professor Anderson said that women should start HIV treatment at the same time as men and use the same medicines. Delegates discussed the prescribing restrictions that came into force in London back in 2011. Some delegates expressed anxieties around having had their medicines switched. Professor Johnson responded; “Many of the regimens that are used have the same outcomes, clearly there is financial issues within the healthcare system. 20% of the drug budget in the UK has been on HIV drugs. There would be no clinician in the UK who would give inferior drugs.” The discussion moved on to inequity in access

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Winter 2013

Robert Fieldhouse

to specific monitoring tests; bone DEXA scans and heart artery scans particularly were discussed. Professor Anderson reassured the audience that the new British HIV Association Standards for HIV Care were designed with a view to enabling equitable access to treatment and care across the UK, regardless of where someone accesses care. Professor Johnson looked at the needs of women with HIV as they age, discussing data on early menopause and HIV and reminding the audience that HIV positive women can access mammography at any age and then at three yearly intervals. She discussed a higher rate of symptoms experienced by women during the menopause, including sleep disturbance, loss of libido and vaginal dryness. She flagged the increased risk of both diabetes and heart disease and the pros and cons of hormone replacement therapy among women going through the menopause, in particular, the potential for it to reduce bone mineral density and increase the risk of cardiovascular disease. Finally, she discussed the impact of body fat changes- limb fat loss particularly, which women with HIV are more likely to experience compared with men. Gender-Based Violence Opening her presentation on gender based violence Positively UK’s Deputy Chief Executive Silvia Petretti told delegates; “What is happening here today is so important, because I believe one hundred percent that we are at the centre of the response to HIV. We have all the knowledge, all the experience and what we can mobilize here can make a real difference, not just in our lives. Because we are the brave ones; to get here takes a lot of courage, a lot of strength. We know so many of our sisters don’t even dare to show their faces in places where they can get support, so we www.baseline-hiv.co.uk

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have an incredible responsibility and a privilege to be mobilized and do what we’re doing, not just on our behalf but on behalf of all those women living with HIV who are still invisible, who are still isolated, who are still living in very dark places.”

‘Delegates discussed the prescribing restrictions that came into force in London back in 2011. Some delegates expressed anxieties around having had their medicines switched.’ Silvia Petretti discussed the role gender-based violence plays in increasing women’s likelihood of becoming HIV positive. She also acknowledged that once diagnosed women living with HIV are increasingly vulnerable suffering further violence. Silvia reminded participants that there was no mention of the role of gender-based violence in the 2001 National HIV and Sexual Health Strategy. Today England has no HIV strategy and if one is to be developed it will likely fall to activist groups such as Ffena to raise the call to have GBV discussed as an important issue relating to sexual health. Some of the delegates had taken part in research that Petretti presented from Homerton Hospital which demonstrated that 52% of 198 women living with HIV attending that clinic reported intimate partner violence ever with 14% experiencing it in the past year. There’s also evidence that violent relationships become more violent following a woman’s HIV diagnosis. Silvia raised awareness of Re:Assure, a project based at Positive East in London which aims to support refugee/asylum seeking women who are living with HIV/AIDS on their journey to overcoming traumatic experiences. They provide individual ++

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one-to-one psychological therapy for women and a six-week group course on ‘Self-expression, sex and relationships.’ For more information email: reassure@positiveeast.org.uk, or telephone 020 7791 2855.

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Silvia Made the Following Recommendations The Government should formally recognize links between GBV and HIV More peer networks should be develop as a tool to counter GBV There needs to be universal screening for GBV The government should include GBV in any HIV/ Sexual Health Strategy

Female Genital Mutilation Female genital mutilation, where the clitoris or outer parts of a woman’s vagina are removed is a form of violence against women. It’s typically performed on girls aged 7-12 years of age. More than 150 million women living today have undergone this ‘ritual.’ Though widely practiced in Africa it’s also practiced among Muslim and Christian communities in some areas of the Middle East In the UK an estimated 300,000 women have been genitally mutilated with around 4,000 women undergoing the procedure in this country annually. The procedures are often unsafe, with a risk of HIV transmission. There have been cases where people have taken their daughters to Africa to undergo the procedure. Around 80% of procedures involve removal of all of the outer parts of the vagina, in 15% of cases only the clitoris is removed. It is rarely a safe procedure, often conducted in an unhealthy environment. The UK does not currently prosecute people under these circumstances, a point debated as a potential lobbying issue for Ffena. HIV and Faith The afternoon sessions covered HIV and faith and sex and relationships. The faith workshop acknowledged the dangerous advice given out 22

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by a small number of pastors advocating a faith cure in the place of medication. The network recommended AHPN increase their education and training initiatives with pastors. In addition the women debated raising awareness of the issue of women being forcibly sterilized in order to receive free formula milk for their babies.

“Wherever there’s a woman there’s a voice.” Closing the day Francis Kaikumba, AHPN Chief Executive told assembled delegates; “This is the future. Today is not the end it is very much the beginning of the journey. Where else will these conversations take place in this country? Continue to be agents of change in your regions. We need the voice of Ffena amplified.” The African women leaders who led and participated in the conference outlined their priorities for improving the treatment, care and services they access. Overall, the women called for the genuine implementation of no decision about me without me, a principle that enshrines the greater meaningful involvement of women living with HIV. As women leaders they called for increased representation and consultation with clinicians, policy makers, commissioners and the wider HIV sector, including BHIVA and other networks and organisations. The women called for increased support and opportunities for African women to take leadership roles, changing the face and understanding of HIV in their communities and wider society. The ‘asks’ that were discussed at the conference have since been finalized by the steering committee who are now working in their local Ffena groups to take them forward. The asks will form the basis of Ffena’s activism in 2013-14, which will target policy-makers and organisations that affect the treatment, care and support that African women living with HIV receive.

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Winter 2013

Ffena; A Vibrant Network of African Women Activists The Specific Asks Made by the Conference Are: 1) As women we call for a gender-specific approach to HIV treatment and support that meets our changing needs at different stages in our lives. When of reproductive age, we need better information about our treatment options and access to safer conception and contraception services. As we get older, we need support to access necessary medical services, both specific to HIV and non-specific, including cancer screening programmes and DEXA scans. Throughout our lives we need recognition of the HIV related comorbidities and wider issues that affect us, including gender based violence, for which we call for a universal screening programme for women living with HIV. 2) As African women we call for support and services that recognise the specific challenges we face. We call for health professionals to ensure they communicate effectively with us, ensuring all relevant information is given and understood and that we are meaningfully involved in decision-making. We also call for patient-friendly, accessible information about treatment, clinical standards and other guidelines that recognise the specific needs of different groups. 3) We call for the greater involvement of African women living with HIV, in all areas and at all levels including design, implementation and leadership: as patient representatives, in clinical and social research, in service delivery and in projects. www.baseline-hiv.co.uk

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BASELINE wishes the Ffena network good luck on its recent nomination for the Best Ensemble Cast Award in the WEGO Health Activist Awards which celebrate excellence in health activism. This award is awarded to a group who advocates with tireless dedication and wide-reaching impact. See Ffena and the other nominees at http://tinyurl.com/bjh3yqe This article was sponsored by AbbVie* with no editorial control or input. *AbbVie (NYSE:ABBV) is a global, researchbased biopharmaceutical company formed in 2013 following separation from Abbott. AbbVie combines the focus and passion of a leadingedge biotech with the expertise and capabilities of a long-established pharmaceutical leader to develop and market advanced therapies that address some of the worldâ&#x20AC;&#x2122;s most complex and serious diseases. In 2013, AbbVie will employ approximately 21,000 people worldwide and markets medicines in more than 170 countries. For further information on the company and its people, portfolio and commitments, please visit www.abbvie.co.uk

OCCUPY as Rehab Maybe you have read newspaper reports about the OCCUPY movement, particularly the Occupation (camp) in the Courtyard of St Paul’s Cathedral, which happened from October 2011 ‘til the brutal eviction in February 2012. OCCUPY activists are deeply concerned with issues of social and economic justice - particularly the way large Corporations and Banks control the world in a way which disproportionately benefits a tiny minority, undermining democracy and leading to unsustainable societies where millions live in poverty.

“You are more than welcome to take part in the Occupation, but please stay in your hostels at night so you do not lose your beds and future housing or rehab.” Our main act of Civil disobedience is to OCCUPY places, (as in the recent occupation at Friern Barnet Library in North London to keep it open) educating fellow citizens about the corruption that has been going on within the global banking systems, hence the existence of ‘Tent City University’ one of the most vibrant parts of the St Paul’s Occupation. There, thousands of activists and academics mobilised and discussed how to try to make the current system more ethical and more equal. I was inspired by OCCUPY and went along to 24

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contribute of course! This article is about some of my involvement in London’s OCCUPY Community. OCCUPY had a Welfare Working Group (WWG) of which I was a part. Some OCCUPYers resented signs around the camp that said “OCCUPY is a drug and alcohol free space.” It’s not that we wanted it to be otherwise, but it did make OCCUPYers who happened to be ex/current drugs users feel a little alienated. Moreover, there were people living with HIV and Hep related cancers there and we had to deal with the Murdoch press, who were only too ready to undermine the importance of our work by reporting; “junkies causing health threats” when a few of us had the decency to provide sin-bins for fellow activists - diabetics and others who needed to dispose of used needles. The usual stigmatising misanthropic rubbish… WWG activists were advised to refer people to care services outside of OCCUPY as most of us did not have the skill-set to help anyway. That would have been fine IF people felt helped by those services, but sometimes they just didn’t and thus wouldn’t go. My guess is that few people who live with addiction problems or are professional drugworkers had been part of setting up OCCUPY, so we were not entirely prepared. Plus, to be honest, it is not uncommon to have hangers on at such political camps: that is people who just come along for the ride... BUT I am not talking about those who indulged in “all-night drinking sprees, keeping people awake at night.” I was referring to the small minority of addicted users there who also

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Winter 2013

Andria Efthimiou-Mourdaunt Photo Credit: Paul Davey

lived with various health conditions including HIV and hepatitis. The point was that we had gathered in difficult circumstances to protest against socioeconomic inequality, but also wanted (and/or felt obliged) to give a hand because we cared about our fellow OCCUPYers.

’The truth is that almost everybody that lived in the camp gave support of one kind or another to each other.’ I found myself therefore torn between trying to give peers support but also really wanting to do the actual work of OCCUPY. The truth is that almost everybody that lived in the camp gave support of one kind or another to one and other, but we had serious concerns about the tiny group of people, who were leaving their (homelessness) hostels/rehab in order to be part of the Occupation. The hostels were not perfect but they were a route to permanent accommodation and we really did not want people to lose that chance. At least four days a week, we had mic’d -up [amplified] General Assemblies (GA) where everybody gathered together to discuss management of the camp and political strategies. So, we used the GA to appeal to people about this issue. We said, “You are more than welcome www.baseline-hiv.co.uk

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to take part in the Occupation, but please stay in your hostels at night so you do not lose your beds and future housing or rehab.” In the end we had to accept that we were all adults and that if somebody chose to leave a hostel, it was their responsibility, BUT this was extremely hard sometimes. Maybe the best thing I did was to get fellow activists to health-care appointments and let them use my home to bathe and wash clothes: cuppaand-a-chat at Aunty Andria’s kinda thing! The good news is that a lot of people did get support through OCCUPY and change their lives for the better: at the very least, people gained community and learned about social/political activism. I think you might all agree that under this government, we certainly need ALL of the above… ++

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Marthe Le Provost and Linda McDonald

Recruiting Now:

AALPHI Study of HIV Positive and HIV Negative Young People A study that aims to follow HIV positive and HIV negative young people in the UK aged 13-21 as they move into adulthood recently opened. Findings from the Adolescents and Adults Living with Perinatal HIV Cohort (AALPHI) study (known to young people as “Alfie”) will help health professionals improve HIV treatment and support for young people with HIV in the future. Two groups of young people are being invited to participate in the study: 400 young people who acquired HIV as children; and 300 young people who are HIV negative, but are either a sibling of or live in the same house as an HIV positive person in the study, or were born to an HIV positive mother. It is important to include both HIV positive and HIV negative young people because it is only by comparing these two groups, that we can find out whether any ill-health among the young people with HIV is due to HIV, or HIV drugs, or to lifestyle factors (e.g. environment, family circumstances, education). Participants will be recruited from paediatric and adult HIV clinics, as well as referral by study participants and the voluntary sector. By the beginning of January 2013, 71 young people from 7 NHS clinics and 2 voluntary sector services had enrolled. Staff at all participating sites have been extremely pro-active and supportive of the study. Initial feedback from participants mirrors this and has been very positive. Experience so far shows recruiting young people with HIV is easier than recruiting young people who are HIV negative due to the young positive people attending clinics and therefore being easier to identify. Involving voluntary sector services and parents to help recruit HIV negative young people is crucial to the success of this important study. 26

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Recruitment of participants will continue until September 2013. Until now, relatively little has been known about how HIV affects the health of adolescents who acquired HIV as infants. But the breakthroughs in treatment of HIV in the late 1990s mean that children are now surviving into adolescence and adulthood, with HIV becoming a long-term, manageable condition. The Collaborative HIV Paediatric Study (“CHIPS”) www.chipscohort.ac.uk follows HIV positive children in the UK until they move to adult HIV care. This is a crucial period as it can often be linked to worsening health, with young people not attending appointments and not taking their medication regularly. Therefore it is imperative that young people are followed-up into adulthood. Participants will be interviewed for 2 hours in private about their health by the AALPHI research nurses every year for five years. AALPHI is a collaboration between the Medical Research Council Clinical Trials Unit (MRC CTU) and the HIV Young Persons Network (HYPNet), working with NHS clinics and voluntary organisations who support young people living with HIV. The study has been awarded an initial three years of funding from the Monument Trust (Sainsbury’s Family Charitable Trust). Further information If you want more information, think your organisation should be involved, or you have children or are yourself interested in participating, please do not hesitate to contact us on the e-mail below. Email: aalphi@ctu.mrc.ac.uk Web: http://tinyurl.com/bdcbhet

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Winter 2013

7th Annual Conference of the Children’s HIV Association (CHIVA)

ENTERING A NEW ERA Friday 10 May 2013 The Queens Hotel · Leeds Introduction CHIVA is delighted to announce its 7th Annual Conference, which will be held at the The Queens Hotel in Leeds. Ms Maria Dowie has been invited, and kindly agreed, to serve as Local Host for this event.

Registration Rates and details can be viewed via the CHIVA website. You can register by using the forms published in the First Announcement.

Key conference topics: ▶ Hematopietic cell transplantation in HIV: what are the odds of finding a donor? ▶ The search for a cure ▶ Debate: Children should be offered treatment regardless of CD4 count ▶ What’s it like to be a sibling of a person living with HIV? ▶ CHIVA Africa update ▶ The returning traveller and HIV ▶ European cohort collaborations ▶ Commissioning: the future of paediatric services ▶ CHIVA Networks update ▶ HIV and religion ▶ Interactive difficult case presentation session

CHIVA Conference Organiser: Mediscript Ltd, 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD Tel: 020 8369 5380 · Fax: 020 8446 9194 · Email: chiva@chiva.org

www.chiva.org

BHIVA Launch Standards of Care for People Living with HIV You’ll be well aware that there are many changes afoot in the NHS, changes that will inevitably affect the care we receive and potentially who provides it.

The Standards are applicable to all adults living with HIV in the UK, including people in places of incarceration such as prison and immigration removal centres. There’s also a hope the Standards will provide a The British HIV Association (BHIVA) has always framework to inform and support commissioning been concerned that there needs to be equitable decisions both within and outside the NHS. They access to HIV treatments and care across the UK. are not an exhaustive list but a MINIMUM anyone A set of Clinical Standards have been developed with HIV should expect to be able to access. by leading HIV doctors and advocates. They were The Standards incorporate the appropriate published late last year and will now be promoted care and services that people with HIV should be to clinics. It’s important that you are familiar with able to access to enable physical, psychological, them, as they describe the MINIMUM level of care emotional and social well-being and facilitate selfyou should receive. management, all of which combine to enhance “There is an urgent need for these Standards,” quality of life and promote best health outcomes. Professor Jane Anderson, Chair of BHIVA and The Standards constantly emphasise the Co-Chair of the Standards writing group said; importance of psychosocial support. “The complex jigsaw that is high quality care for They include mechanisms for user engagement people with HIV is at risk of fragmentation in the in service design and delivery and they mention new NHS. The Standards will ensure that people the importance of peer support throughout. with HIV, providers and commissioners of care They are also auditable so clinics should be have a benchmark for what good care looks like.” able to see how well they are doing in providing Clearly she sees them going some way to ensure the agreed minimum standard of care. our world class NHS HIV services are not lost in Speaking at the launch Chris Sandford, patient successive rounds of NHS change. representative at the Mortimer Market Centre, Each Standard is a specific, concise statement University College Hospital in London said; “These about the care that any adult living with HIV in Standards – 33% of which are about non medical the UK should expect to receive. They set out issues - emphasise the impact that psychosocial those areas of care that are fundamental to high- support can have on positive health outcomes. quality outcomes that will facilitate delivery of The most obvious example I can think of is this: the NHS Outcomes and Public Health Outcomes Information, support and self-management Frameworks (2012). = better adherence. Better adherence = an The Standards cover HIV care from HIV undetectable viral load. An undetectable viral diagnosis to end of life. load = less onward transmission. Less onward The Standards acknowledge a changing transmission = fewer diagnoses.” health and social care landscape, intending to give And that has to be good for everyone. We guidance to all providers (regardless of their HIV have summarized the Standards for you, but experience or how HIV specific they may be). recommend you take a look for yourself. They are available at www.bhiva.org 28 Winter 2013 ++++ ++ +++-

Robert Fieldlhouse

Standard 1: HIV testing and diagnosis People attending health care services (primary, secondary and tertiary care) should be offered diagnostic tests for HIV in accordance with current national guidance. Standard 2: Access to, and retention in, HIV treatment and care. People newly diagnosed with HIV, wherever they are tested, should be offered a full assessment, carried out by an appropriately trained practitioner with specialist expertise in HIV, at the earliest possible opportunity and no later than 2 weeks after receiving a positive HIV test result. Services must have mechanisms in place for those who miss appointments or who transfer their care to another centre, to ensure people with HIV are retained in specialist care. Standard 3: Provision of outpatient treatment and care for HIV, and access to care for complex comorbidity People with HIV attending an outpatient HIV service should have their HIV infection monitored and treated safely in accordance with national guidance, and be able to access a comprehensive range of specialist comorbidity services as required.

www.baseline-hiv.co.uk

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Standard 4: Safe ARV prescribing: Effective medicines management People living with HIV should be prescribed antiretroviral drugs by an appropriately qualified clinician and receive treatment and monitoring with such drugs that follow current national guidance. Standard 5: Inpatient care for people living with HIV People with proven or suspected complications of HIV infection or its treatment who require admission to hospital should receive equitable and rapid access to care by appropriately trained staff either within a consultant-led HIV specialist multidisciplinary team or within an acute medical team supported by immediate and continued engagement with specialist HIV expertise and advice. Standard 6: Psychological care People living with HIV should receive care and support which promotes their mental, emotional and cognitive well-being and is sensitive to the unique aspects of living with HIV.

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Standard 7: Sexual health and identification of contacts at risk of infection People living with HIV should be supported in establishing and maintaining healthy sexual lives for themselves (and their partners). People with HIV should be supported to protect themselves (and others) from acquiring new sexually transmitted infections, with access to regular screening and prevention interventions for all sexually transmitted infections. People living with HIV should be offered support from staff competent in partner/contact notification with expertise relevant to their individual circumstances. This should enable their personal contacts who are at risk of HIV, including their children, to access HIV testing with appropriate consideration of confidentiality and safety. Standard 8: Reproductive health People living with HIV should have access to safe, effective, and acceptable methods of fertility regulation, both for conception and contraception. Women living with HIV must be able to access appropriate health care services for a safe pregnancy and childbirth which provide the best chance of having a healthy infant.

Standard 10: Participation of people with HIV in their care People living with HIV should have opportunities to be actively involved in decisions about their health care. People who use HIV clinical services should have opportunities to be involved in the design, planning and delivery of these services. Standard 11: Competencies People living with HIV should receive care overseen by a consultant physician specialist in HIV and provided by practitioners with appropriate competencies within suitable and recognised governance and management structures. Standard 12: Information for public health surveillance, commissioning, audit and research Services delivering HIV care should actively provide data to national surveillance programmes and national and local audits, and for research purposes. People with HIV should expect to be informed of opportunities to take part in ethically approved research that is relevant to their health and care.

Standard 9: Self-management People living with HIV should be enabled to maximise self-management of their physical and mental health, their social and economic wellbeing, and to optimise peer-support opportunities.

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Winter 2013

BASELINE Magazine at your fingertips Supported by

Available now

THT pilot innovative GP model of HIV care The Terrence Higgins Trust is working with NHS hospitals and GP practices to develop a new community-based HIV service that should be easier to access and offers comprehensive HIV and other health and social care support at a clinic in a local GP practice. Moving care from hospitals to the local community represents a significant change in the way that HIV services are delivered and acknowledges that, for many, HIV is now a manageable long-term condition that does not always require acute resources.

“Regular blood testing is essential for staying well and we are taking advantage of point of care technology to provide rapid, on the spot CD4 results.” Peter Richards, Clinical Nurse Specialist at the Terrence Higgins Trust, told BASELINE; “Advances in HIV treatment mean that many people living with HIV are stable and well and don’t always need consultant-led hospital care. In today’s changing health economy there is increasing pressure on acute hospitals and it makes sense to move some parts of HIV care into the community. This change in approach not only allows us to develop a new model of care that more fully meets the needs of people with HIV and better integrates with primary care services, but also allows us to better allocate expensive hospital resources to those people who need them most. Nurse-delivered community care introduces significant benefits to our patients. By bringing together all of the related healthcare providers we can not only expand the range of services that we offer in a single clinic, but we can also extend clinic opening hours to evenings and 32

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weekends.” 2 ‘pilot’ clinics are already up and running in Lambeth, South East London - an area that has the highest prevalence of HIV in the UK. “OneClinics” are a collaboration between The Terrence Higgins Trust, Kings College Hospital, Clapham Family Practice and The Hurley Group-Vauxhall and represent the first time that the NHS and charities have come together to deliver a package of patient-centred services for HIV positive people in a single, easy to access clinic. In addition to routine tests such as CD4 counts, viral loads and prescribing antiretrovirals, ‘OneClinics’ will also provide a range of other related services such as immunisations, travel vaccinations, sexual health screening, ‘well man’ and ‘well woman’ checks with referral for interventions, counseling and support where necessary. Peter commented, “ If HIV is diagnosed early and appropriate drug treatment initiated, we can expect people to live long and healthy lives. However regular blood testing is essential for staying well and we are taking advantage of point of care technology to provide rapid, on the spot CD4 results. We hope that a more holistic approach to HIV care with improved access and extended services will be a new model for the future.” The pilot project is currently half way though implementation and patients that are already enrolled are giving very positive feedback. You don’t need to be registered at the GP practices in order to attend the “OneClinic’ and Peter is keen to encourage more people to participate in the project. If you would like to contact him to discuss enrollment, email him at Peter.Richards@tht.org.uk This article was supported by Alere www.alere.co.uk ++

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Winter 2013

Optimising HIV diagnosis and management Our aim at Alere is to improve the diagnosis and management of people with HIV by delivering critical lab quality results in the clinic or community.

alere.co.uk

Oasis at Ammerdown Origins - In 1990, 4 people in the London area met and discussed their wish to help those facing HIV diagnosis and the onset of AIDS related illness. Two of the four being Rabbi Lionel Blue, and the Reverend Malcolm Johnson. Their particular concern was with the social and spiritual aspects of this emerging epidemic. Weekends were arranged on an occasional basis at various venues. The idea being that those affected by HIV/AIDS, their carers, partners and families could be away for 2-3 days in a safe context to consider their situation, particularly the emotional, relational and spiritual aspects.

Bonnie Davies Mach

Evolution - Retreat weekends have been held in association with a number of organisations and usually under the umbrella of a larger body, now the Eddystone Trust based in Plymouth. The weekend is based at the beautiful Ammerdown centre in the heart of North Somerset, with beautiful scenic surroundings and some lovely walks within the vicinity. There is a spiritual aspect which is very low key, but sufficiently evident to enable those guests who wish to take the opportunity to explore such things can do. The idea is to provide a safe space with a warm welcome and good food for each participant to share their story. The ‘Committee’ are made up of volunteers, most of them HIV positive, who have a strong desire to understand and be supportive of all guests. We also act as facilitators for small groups. Weekends are structured but guests can do as little or as much as they wish. We try to find space for an outing to Wells or Bath and we also get everyone participating in a ‘party’ on the Sat night, this is great as people really open up and bring different talents to the group. On Sunday we include some kind of celebration which is normally a reflective time, concluding in a big Sunday dinner before everyone departs. Therapies - Each year we offer a variety of therapies, massage, reflexology as well as some art therapy, which all help to relax the guest. Details - Dates for 2013 are Friday 22nd MarchSunday 24th March. The weekend is heavily subsidised by Ammerdown due to their great commitment to us coming back year after year. Dinner, bed and breakfast including en-suite accommodation is available for £160, Fri morning people start to arrive, lunch is served at 1pm, departing on Sunday after lunch. Shared rooms are available as well as disabled rooms for those less able. All dietary requirements can be catered for as well as bottled water. If you are interested in attending OASIS next year please can you contact Maureen Bromage at the Eddystone Trust, Plymouth on Tel: 01752 254406.

focusing on: - healthy eating for babies, toddlers and kids with hiV

- Dietary basics with Clare stradling, hiV dietitian

- a trip to the market on ÂŁ35 - what is the portfolio diet? - back to basics with quick Available at

and simple whole foods

- the food Chainâ&#x20AC;&#x2122;s services - healthy living advice from waverley Care, edinburgh

- Come (hiV) dine with me

8 sho rt f i l m s a b o u t e at i n g well with hiV This project is produced by BASELINE and supported by ViiV Healthcare. Printing provided by ViiV Healthcare.

Chris O’Connor

news: global Break the Chain – Forge New Links

Switzerland has increased testing, has more men on ARVs but has not seen a significant decline in new HIV diagnoses. A fresh integrated approach is being tried in Switzerland. ‘Break the Chain’, the Swiss campaign aimed at breaking the cycle of new HIV infections, will be running again in April 2013. The first campaign ran in April 2012 and preliminary results indicate increased awareness around HIV primary infection and safer sex, an 18% increase in testing - but figures on new diagnoses in the period will not be known until mid-2013. The Swiss Federal Office of Public Health (SFOPH) is working with the Swiss gay community, aiming for zero new HIV infections for the month of April. According to Steven Derendinger of the SFOPH, ‘we are asking the gay community to work together with us and commit to changing behaviour – our main goal is no new infections for one month – then after April everyone gets tested. Why one month? If the last infection takes place, on say, the 31st March, someone would be detectable within one month with the new HIV test. “Test and Treat is not enough on its own to prevent transmissions,” says Derendinger, who

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points out that in Switzerland on average there is a two year gap for men between HIV exposure and diagnosis. It is he says ‘during that initial period of primary infection the first eight weeks – when someone is 20 to100 times more infectious than at later stages of HIV infection – safer sex is still the best way to prevent transmission.’ A range of interventions is being developed using the experiences of older gay men, social media through Facebook and Twitter and ad campaigns. Break the Chain is also the first HIV prevention campaign that uses a smartphone application, claim SFOPH. “People can download the application, answer a few questions on their sexual behaviour, and receive different propositions on how they can commit to the campaign,” says Derendinger. He adds, “for instance, avoid anal sex for one month and discover new erotic ways of having sex, and so on. With the application, they also have different vouchers for goodies in gay businesses. It’s a way of rewarding the participants to commit and care - to make their scene less at risk.” The new website will be launched on March 1st www.breakthechains.ch

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Autumn 2012

Forum Link

Support for people living with HIV or Hep C in Scotland From our bases in Edinburgh, Glasgow, Lanarkshire and Inverness, Waverley Care offers 21 years of experience, and a wide range of support, information and advice.

Providing a voice for HIV patient groups across the UK

Forum Link aims to strengthen the voice of HIV positive patient representation in both service delivery & development locally, regionally and nationally.

Waverley Care is here for you – Contact us now for more information

We offer expert technical, advisory and development support for new HIV positive patient groups to assist in setting up of new groups.

Waverley Care, 3 Mansfield Place, Edinburgh EH3 6NB Tel: 0131 558 1425 Email: info@waverleycare.org www.waverleycare.org

Contact: administration@forum-link.org 020 7738 0258 http://www.forum-link.org charity number: 1150522

Scottish Charity No. SC036500

      

   

Chris O’Connor

news: global Uganda - Mandatory Testing ‘routine’

In Uganda all people who seek treatment in public health centres will undergo mandatory HIV testing under a plan to increase access to HIV prevention and treatment, according to the Ugandan Health Ministry in local news sources. Under a programme initially named ‘provider-initiated testing’, HIV counseling and testing will be incorporated in the routine medical care, according to Dr. Alex Ario, the acting manager of the AIDS Control Programme. In Uganda, mandatory testing was first piloted on expectant mothers attending antenatal care and general patients at regional referral hospitals in 2009. However, Ario said the system would now be rolled out to cover health centres across the country during 2013. “Mandatory HIV testing will now be part of the many tests conducted whenever a patient is admitted. It will be part and parcel of our routine medical care,” said Ario. He said that patients “will not be compelled to know their results.” Ugandan HIV activists warned that the Government must improve the health system in order to cope with the likely increase in the numbers of those in need of treatment. “It’s a good initiative, but our health system is struggling. It has not measured up. We have shortages of health workers,” Florence Buluba, the executive director of the National Community of Women Living with AIDS, told IRIN. “The Government first needs to address the challenges the health sector is facing before rolling out the programme.” Uganda employs a number of testing strategies, including routine HIV testing for pregnant women, clientinitiated counseling and testing, home-based HIV testing, couples HIV testing, mobile HIV testing and moonlight (night-time) testing for high-risk groups such as sex workers. The number of people tested for HIV annually has gone up from 1.1 million in 2008 to 5.5 million in 2011. The new strategy is part of efforts to lower Uganda’s HIV prevalence, which climbed from 6.4% to 7.3% between 2006 and 2011. 38

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PEPFAR Squeeze Closes Hospital Doors

The McCord Hospital in Durban; a landmark presence in the fight against HIV/AIDS in South Africa and home to the country’s biggest HIV care and treatment programme, is set to close its doors in March. The hospital had stopped providing key services last year, “due to reduction of funding from other sources” said a health department spokesperson, alluding to the US President’s Emergency Plan for AIDS Relief (PEPFAR) programme, of which McCord had been a beneficiary department of Health funding has now been withdrawn. The Sinikithemba ARV clinic at McCord, with 5,000 patients which was forced to close led to initial concerns that patients could get lost during the transition to other clinics or drop out of treatment and develop drug resistance. These issues appear to have been avoided. Public clinics around Durban have reported an influx of McCord patients. “By taking the unprecedented step of reducing funding for PEPFAR and actually shutting down successful treatment facilities, the Obama Administration is flip-flopping on its own recent promise to put 6 million people on treatment by 2013. This action jeopardizes the remarkable progress that South Africa has recently achieved in its revitalized efforts to stop AIDS,” said Terri Ford, Chief of Global Advocacy at AIDS Healthcare Foundation.

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Winter 2013

Rebecca McDowall

BASELINE’s guide to immune boosting foods

Acai Berry - Well known as a “super food”, this tiny berry is high in antioxidants called anthocyanins. Antioxidants may help your body fight ageing and disease. Acai berries can be found in juice or smoothie form, or dried. Almonds - A handful of almonds may protect your immune system from the effects of stress. A recommended 1/4 cup serving carries nearly 50% of the daily recommended amount of vitamin E, which helps boost the immune system. On top of that they have riboflavin and niacin, B vitamins that may help you bounce back from the effects of stress. Broccoli - Easy to find at the grocery store and incorporate into meals, broccoli is an immuneboosting basic. One study reported a chemical in broccoli helped stimulate the immune systems of mice. Plus, it’s full of vitamin A, vitamin C, and glutathione. Button Mushrooms - This fab fungus is great for the mineral selenium and they’re full of antioxidants. Low levels of selenium have been linked to a greater risk of developing more severe flu. B vitamins riboflavin and niacin, found in these mushrooms, play a role in keeping the immune system healthy. Cabbage - Packed with immune-strengthening glutamine. It’s easy and cheap to find during the winter months, when it’s in season. Garlic - Garlic offers several antioxidants that battle immune system invaders. Among garlic’s targets are H. pylori, the bacteria associated with some ulcers and stomach cancer. Grapefruit - Grapefruits are packed with vitamin C and flavonoids -- natural chemical compounds that have been found to increase immune system 40

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activation. Dislike grapefruits? Substitute with oranges or tangerines. Low-Fat Yogurt - Eat it daily to reduce your chances of getting a cold. Look for labels listing “live and active cultures.” Some researchers believe they may stimulate your immune system to fight disease. Oysters - An aphrodisiac? Immune boosters? Possibly both. Spinach - Another as a “super food,” spinach is nutrient-rich. It has folate, which helps your body produce new cells and repair DNA. And it boasts fibre and antioxidants, such as vitamin C. Don’t overcook it or you’ll lose the benefit. Sweet Potato - Like carrots, sweet potatoes have the antioxidant beta-carotene, which mops up damaging free radicals. Sweet potatoes also contain vitamin A, which is linked to slowing the ageing process and may reduce the risk of some cancers. Tea - Green or black? Does not matter. Both are loaded with disease-fighting polyphenols and flavonoids. These antioxidants seek out cell-damaging free radicals and destroy them. Caffeinated and decaf work just as well. Watermelon - Will keep you hydrated and is packed with a powerful antioxidant, glutathione, which is known to help strengthen the immune system. Wheat Germ - Wheat germ is the part of a wheat seed that feeds a baby wheat plant, so it is full of nutrients. It has zinc, antioxidants, and B vitamins among other vital vitamins and minerals. Wheat germ also offers a good mix of fibre, protein, and some good fat. ++

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Winter 2013

Free conFidential rapid HiV test HIV IS EVERYONE’S BUSINESS

EARLY DIAGNOSIS = BETTER OUTCOMES

TO GET TESTED

testme@hertsaid.co.uk Call Tony: 07435 963170 / 01920 484 784

3 Decades of HIV in Merseyside Sahir House, Merseyside’s HIV charity has started a 2-year project - 3 Decades of HIV on Merseyside. If you’d like to share your story about HIV and Merseyside or have any HIV-related heritage materials –local leaflets, posters, newspaper cuttings, documents stored away in a box or drawer, please dig it out! Contact Elaine on 0151 237 3989 or elaine@sahir.uk.com

Working on behalf of Hertfordshire NHS and County Council Herts Aid is a registered charity 1130366; Company Registration Number 6910096 www.hertsaid.co.uk

Reg. Charity No 223485

S EX ?

Robert Fieldhouse

Positive East trek Kilimanjaro

At the time of going to print, 15 brave trekkers have just begun their ascent of Africa’s tallest mountain in a bid to raise funds for Positive East. They are each raising money to help Positive East continue to deliver their range of community support groups, which specifically work with African men and women affected by HIV in east London. The Positive East team are joined on their trek by British Olympic medalist Tasha Danvers, who is delighted to be able to support her community: “As an Olympian you often spend time having to be very selfish in order to achieve your goals. It’s so refreshing for me to be able to do something challenging for the benefit of others.” Danvers continued: “Positive East’s work is hugely important to the communities of London. When I heard the Kilimanjaro Challenge would contribute to something which works right at the grassroots of our communities I couldn’t say no. It’s a fabulous project which helps hundreds of the neediest people in London to get back on their feet in the face of adversity and live full, healthy lives.” The former track and field star hopes that by signing up to Positive East’s Kilimanjaro Challenge

she can inspire people around her to get involved: “I love working with charities, and it’s even better when I get to encourage other people to get involved too. I think sometimes we underestimate what even the smallest gesture could mean for someone else.” Make sure you keep up to date with Positive East’s Kilimanjaro trek by following @PositiveEast on Twitter, and give whatever you can to support their efforts by donating through www.donate2positiveeast.org.uk

How to survive a plague is the story of the brave young men and women who successfully reversed the tide of the HIV epidemic, demanded the attention of a fearful USA, and stopped AIDS from becoming a death sentence; a group of activists who stared oppression in the face and infiltrated government agencies and the pharmaceutical industry, helping to identify promising new medication and treatments and move them through clinical trials and into the clinic in record time. In the process, they saved their own lives and ended the darkest days of a veritable plague, while virtually emptying AIDS wards in American hospitals. Theirs is a classic tale of activism that has since inspired movements for change in everything from breast cancer research to Occupy Wall Street. How to survive a plague is “extraordinary, remarkable, and one of the most important documentaries in years or decades.” -Andrew O’Hehir, Salon. This title will be released on amazon.com on February 26th 2013. 42

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Winter 2013

Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk Lottery Funded Adult Personal Developments Breaks Available at KPS Trebullom

Are you a gay man wanting info on cognitive impairment? London Positive Gay Men’s Group is hosting Dr. Alan Winston, Consultant Physician and Senior Lecturer in HIV & GU Medicine of  Imperial College Healthcare NHS Trust St. Mary’s Hospital, Paddington to deliver a presentation on HIVrelated cognitive impairment on Monday March 18th, from 6pm-8pm at the usual meeting venue: The Victoria Boardroom at 56 Dean Street, Soho W1D 6AQ. If you are a positive gay man and would like to join the group get in touch via the website www.GMG.org.uk

KPS Trebullom now offer four day fully-funded Adult Personal Development Breaks respite breaks at their beautiful farmhouse ‘Trebullom’, in Altarnun near Launceston, Cornwall. During their stay, guests will attend a number of workshops to help them move closer to employment and living without reliance on benefit income, knowing their rights and how to enforce them whilst protecting their need for confidentiality. The workshops cover: Changes to the benefits system - what to expect; Disclosing status - how best to do it; The Equality Act 2010- understanding your rights; Moving towards voluntary work or employment

.. . . Join the Cast of Geek! to Raise Funds for the MADTrust

Geek! A New Musical is a hilarious new piece of writing from the quill of Scott Morgan, premiering at the Tristan Bates Theatre in the heart of London’s West End from 22nd April until 18th May. The cast and crew (including Ewen Macintosh from the Office and CJ de Mooi from Eggheads) are holding a Charity Night and Meet the Cast Party on May 1st to support the ongoing work of The Make A Difference Trust. Tickets for this fantastic event are priced at £25 (£20 concessions) and include the performance at 7.30pm followed by drinks and nibbles in the bar with the cast and creatives. Each guest will receive a signed memento of the evening. We hope you can join MADTrust for what will be a memorable evening. But be quick because tickets will go fast!!! www.baseline-hiv.co.uk

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In addition there are other activities to try such as bread baking, pottery or silver clay jewellery making. This respite break also offers guests the chance to talk to others in a similar position as themselves, learning from one another and developing strategies for dealing with difficult situations. Add in some sightseeing to local tourist attractions and we hope clients will have a busy and really enjoyable four days (three nights) in Cornwall before returning home with a fresh outlook for the future. Breaks are available until March 2015.

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In this issue we’ve realised a long-desired intention to begin providing more information about hepatitis, particularly hepatitis C which it affects one-in-nine people living with HIV in the UK. This was one of the changes you requested in our recent reader’s survey. Traditional hepatitis C treatment (pegylated interferon and ribavirin) works less well for people who also live with HIV. In the past year new HCV drugs have become available, which increase the chance of curing the virus, even among people living with HIV. Uptake of these new treatments has been low. There appears inequitable access depending upon where you live. And with many new potential treatments on the horizon, we think it is really important that we all better understand Over the coming year we hope to bring you updates on the large number of clinical trials on new hepatitis C medicines, which, if licensed, should become more available in 2014/2015. We’d welcome any personal stories about living with or doing hepatitis treatment or for tips on how you manage the condition. Write to us at Robert@baseline-hiv.co.uk We’ve launched a separate Twitter account to follow hepatitis news – join up @BASELINEHEP Finally we’d like to say a big thank you to Janssen who are kindly supporting our decision to begin distribution of the magazine to a number of prisons across the UK and to AbbVie Limited for supporting our attendance at a number of key meetings this year. We’ll be reporting from the British HIV Association Conference in Manchester and the European Association for the Study of the Liver meeting in Amsterdam in April. Contact the team: Editor: Robert Fieldhouse robert@baseline-hiv.co.uk Associate Editor: Jane Phillips editor@baseline-hiv.co.uk News Editor: Chris O’Connor chris@baseline-hiv.co.uk

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Contents 46 headline: UK hepatitis news 48 headline: global hepatitis news 50 headline: hepatitis treatment news 52 hepatitis C: an introduction 56 where pigs fly 58 headline: global hepatitis news

Contributors: Three Flying Piglets, a newly formed group of gay and bisexual men many of whom are living with HIV and/or HCV - experimenting with multimedia and making short films on gay men’s health issues. They also make affordable films for the LGBT community.

Winter 2013

Steve Akehurst

Download www.baseline-hep.co.uk

Magazine directly from ++++

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UK: hepatitis news Rise in report injecting among London MSM The Lancet recently reported a dramatic rise in injecting among gay men on London’s party scene and group sex circuit. Over the past decade use of crystal methamphetamine has increased in London, matched more recently by an increase in use of ‘legal highs’; namely mephedrone (which was reclassified category B back in April 2010, carrying up to 5 years imprisonment for possession). The Lancet reports describes ‘the wide array of recreational drugs available and typically used by gay men during extended sex sessions including ecstasy, cocaine, ketamine, GBL and speed.’ The Lancet reports a rise in high-risk practices among London MSM, including crystal meth use and shared injecting specifically, putting them at risk of infection with HIV, hepatitis C (HCV), and a range of other blood-borne and sexually transmitted infections (STIs). In 2011, there was a record high 3010 new HIV infections in MSM in the UK, which 1296 were in London. Around one in six of all new cases of HIV in MSM in the UK were diagnosed at 56 Dean Street in Soho, London, home to the CODE clinic, a drug support service. Injection of crystal meth or mephedrone to get a bigger or more immediate rush or high or — known as slamming—is also increasing, The Lancet reports. At parties or chill-outs many people are reporting sharing injecting equipment without sterilising it. While most people who inject the drugs dissolved in water, some report withdrawing their blood with a needle, adding either crystal meth or mephedrone to that blood, and then re-injecting it into themselves or someone else. Users can be high for days, reinjecting and having sex with multiple partners without condoms. This 46

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increases the likelihood of HIV/HCV transmission and often leaves users with an array of mental health problems. The drug clinics that are available are massively overworked and struggling to cope under the pressure. David Stuart manages the Antidote Substance Misuse Service at London Friend, a lesbian, gay, bisexual, and transgender health and wellbeing charity. London Friends partners with the UK National Health Service (NHS) partnership clinics: the Club Drug Clinic at Chelsea and Westminster Hospital (funded by the Central and North West London NHS Foundation Trust) and the CODE Clinic at 56 Dean Street (part of the Chelsea and Westminster NHS Foundation Trust), which treats MSM involved in the harder, higher-risk sex scene connected with drug use. Stuart told The Lancet; “Users of crystal meth, GBL, and mephedrone represent 85% of the CODE Clinic’s consultations. In 2011, 30% of the users of mephedrone and crystal meth visiting CODE were injecting these drugs. In 2012, this increased to 80%. Of these, 70% report needle sharing. “It’s a staggering and frightening increase”, he says. London Friend’s drug clinics see 9000 people every year through outreach and directly treat 800. London Friend’s research suggests that during extended sex sessions MSM are having an average of five sexual partners. 75% of the men using crystal meth, GBL, or mephedrone are HIV positive; and of these, 60% report not taking their antiretroviral drugs (ARVs) while high. A new Club Drug Clinic is to be opened soon in Camden to help deal with increasing client numbers. The Club Drug Clinic at Chelsea and Westminster Hospital provides full sexual health and drug treatment services, with a unique +

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Winter 2013

Robert Fieldhouse

funding model meaning that people can self-refer from anywhere in the UK. “Injecting these drugs for some MSM seems to have become sexualised, which is very unusual. We are trying to understand why”, Owen Bowden-Jones, a consultant psychiatrist who was the cofounder of the Club Drug Clinic told The Lancet. “The meaning of an HIV diagnosis in this context is also important”, he said. “People will sometimes say ‘well I knew everyone in the room had HIV’, but when asked about hepatitis C, they say ‘well I didn’t think about that’. We have a mixture of people [who are] HIV and/ or HCV positive and negative people injecting and sharing needles, potentially creating a public health disaster”, says Bowden-Jones. The UK’s Health Protection Agency (HPA) says the estimated incidence of HCV infection in HIV-positive MSM declined substantially over time from 7·38 per 1000 person-years in 2008 to 1·46 in 2011. This drop is in contrast to data from a Swiss cohort of HIV-positive MSM showing that rates of HCV co-infection have increased 18-fold in the past 15 years. Dr David Asboe of the British Association for Sexual Health and HIV told The Lancet to be cautious about current HPA estimates; “Anonymous testing of all blood samples collected at sexual health clinics for syphilis testing could be a way of getting better data on hepatitis C infection in MSM in the UK. We need to be very wary about the current data held and carry out more studies.” Emma Devitt, consultant in infectious diseases and expert in HIV and HCV co-infection working in the Chelsea and Westminster Hospital and the 56 Dean Street Clinic told The Lancet that there is a need for targeted education to men with high risk behaviours to continue, but warned “we’re never going to change people’s behaviour. Sex parties are not going to stop. Closing the saunas in San Francisco in the 1980s did not prevent group sex occurring or change the HIV epidemic there”, she says. “Treating everyone with HIV with ARVs could be the best way to prevent onward transmission including in these high-risk environments. But where will we get the resources to deliver that?” www.baseline-hep.co.uk

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Free Health Day for People with HCV The Hepatitis C Health Day is a FREE oneday workshop run by patients with extensive knowledge of the virus, doing treatment and living with the virus. The workshop is suitable for anyone affected by HCV- just diagnosed, those who have chosen not to do treatment, for whom treatment is contra-indicated, for whom treatment has failed, waiting to do treatment, on treatment, friends or family who wish to learn more and give support and also professionals working with people with hepatitis C The Workshop Covers: What Hepatitis C is, the Liver, symptoms of hepatitis C, diet, exercise, positive attitude, stress management, energy management and includes a healthy and tasty organic lunch, fresh juices and snacks. The dates of the next events are February 23/24, March 16 and April 6. All workshops run from 10.30am to 4.30pm. To book your place call Catherine Corr on 0207 089 call Catherine Corr on 0207 089 6220 or email: catherine.corr@hepctrust.org.uk Want Help or Advice About Hepatitis C? Call the Hepatitis C Trust’s confidential helpline on 0845 223 4424. How were you diagnosed hepatitis C positive? The Hepatitis C Trust is currently running a survey to learn more about how people are diagnosed with HCV in the UK. Take the survey at: http://tinyurl.com/a5ar959 Want to find a local hepatitis C support group? The website www.helpeverypersonc.co.uk has an extensive listing of support groups across the country. To find one near you: http://tinyurl.com/b37klhs +--+

global: hepatitis news European HIV Coinfected People More Likely than Monoinfected to start HCV therapy

Researchers from the Royal Free Hospital in London involved in the European HIV Cohort study EuroSIDA have found that people living with HIV are more likely to take up the offer of starting HCV therapy compared with people living with HCV alone (monoinfection). Across Europe up to 30% of people living with HIV are also living with HCV. All coinfected patients with chronic HCV and moderate fibrosis (liver scarring) should be considered for HCV therapy given their increased risk of death from liver disease. Researchers investigated the uptake of HCV treatment, using at least pegylated interferon plus ribavirin, and possibly the new direct-acting HCV protease inhibitors boceprevir or telaprevir among HIV/HCV coinfected study participants. The analysis included 1947 EuroSIDA participants who tested positive for both HCV antibodies and HCV RNA (hepatitis virus). Just over 40% had difficult-to-treat genotype 1 (GT 1). Overall, 456 HIV/HCV coinfected patients (23%) received hepatitis C treatment during the follow-up period of 107 months. People were more likely to initiate treatment over time from 1998, peaking in 2007 but declining slightly since. The highest rate of treatment uptake was seen in Northern Europe. People with the easier-to-treat genotype 3 (GT3) HCV were more likely to initiate treatment compared with people with GT1. A total of 355 people died during follow up, including 95 from liver-related causes. HCV treatment was not associated with all-cause or liver-related death.

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Global HCV Strategy Needed, Experts Say

A new report, The Silent Pandemic: Tackling Hepatitis C with Policy Innovation, from the Economist’s Intelligence Unit has highlighted the need for countries to tackle a number of growing social and economic issues associated with HCV. The World Health Organization (WHO) estimates that approximately 150 million people globally are currently living with HCV. Without treatment, 1 in 5 will develop liver cirrhosis. The report highlights that as few as 10% of eligible patients are currently receiving treatments and there is a large disparity in care across countries. The report asserts that 16 countries in the EU alone have epidemiological data that is either poor or non-existent. It calls for better public awareness to help remove the stigma associated with the disease and recommends a range of prevention and harm reduction methods for people living with HCV. “The report highlights that each country has different needs and resources; however, we urge all those involved in the management of HCV and public health to help increase awareness of the disease and look at the most effective ways of delivering effective treatment to those most in need,” said Gaston Picchio, Global Hepatitis Disease Area Leader, Janssen. “Janssen is committed to working with the HCV community and will continue to engage with healthcare professionals, government officials and patient advocates around the world to support their efforts to reduce the individual and societal burden of this devastating disease.” Janssen supported the development of the report with an educational grant. A full copy of the report is available at: www.janssen-emea.com/The-silent-pandemic +

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Winter 2013

He shows all the signs of hepatitis C

Steve Akehurst

Hepatitis C can cause fatal liver disease With HIV it does it faster Get tested. Get treated.

hepctrust.org.uk 0845 223 4424

The Hepatitis C Trust is a registered charity UK 1104279 Scotland SCO39914

treatment: hepatitis news HCV PI Telaprevir is Effective for HIV Coinfection

People living with both HIV and genotype 1 (GT1) HCV achieve much improved cure rates by adding the HCV protease inhibitor to standard HCV therapy (pegylated interferon and ribavirin). Divided into two arms, the study examined 13 participants with CD4 counts above 500 who had not yet taken antiretrovirals (ARVs) for HIV, as well as 47 patients on ARVs with a stable HIV viral load. People received either telaprevir or a placebo along with pegylated interferon and ribavirin for 12 weeks, followed by an additional 36 weeks of the pegylated-interferon plus ribavirin combination.   In total 74% taking telaprevir plus pegylated interferon and ribavirin achieved a sustained virological response (SVR) 24 weeks after completing therapy compared with only 45% who received pegylated interferon and ribavirin and telaprevir placebo. Among those not taking antiretrovirals for HIV 71% taking telaprevir triple therapy got an SVR compared to 33% of those taking just pegylated interferon and ribavirin. The most common side effects seen in people taking telaprevir were itching, headache, nausea, skin rash and dizziness.

Liver Cancer Rising Among Spanish Coinfected With HIV/HCV

Latest research suggests liver cancer rates among people coinfected HIV/HCV (hepatitis C) or HIV/HBV (hepatitis B) or HIV/HBV/HCV are rising. Data collected from patient records in 18 clinics in Spain between 1999 and 2010 found 82 cases of liver cancer in people with HIV, all of them among people coinfected with HBV or HCV. Sixty-six people (81%) had HCV; 6 people (7%) were coinfected with HBV; and 10 people (12%) had both HBV and HCV. Only 22 (29%) of the HCV patients had received antiviral therapy for the virus; among that group, six had achieved a sustained virologic response (SVR).  The researchers said the rate of new cases of liver cancer increased14-fold between 2000 and 2009. The researchers suggested the following factors have played a role in the rise: coinfected patients are living longer due to HIV treatment, giving liver cancer more time to develop; HCV therapies do not work as well in HIV-positive people; HIV may speed the course of HCV-related disease; and the improved clinical care for liver cirrhosis has also extended the lives of coinfected patients, giving cancer more time to develop.  The study authors recommended doctors perform routine ultrasound exams on coinfected patients to screen for liver cancer, even among those who have been cured of hepatitis C.   50

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Simeprevir plus Interferon/ Ribavirin Achieves Good Results

The hepatitis C virus (HCV) protease inhibitor simeprevir (formerly TMC435) plus pegylated interferon and ribavirin produced 12-week posttreatment sustained virological response (SVR12) for about 80% of genotype 1 chronic hepatitis C patients, and most could be cured with a 24-week course of therapy. Research recently presented showed that the combination appears safe for people with liver cirrhosis. +

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Winter 2013

Robert Fieldhouse

Daclatasvir, Asunaprevir Regimens Achieve High Cure Rates in Hard-toTreat HCV Bristol-Myers Squibbâ&#x20AC;&#x2122;s investigational HCV medicines the NS5A inhibitor daclatasvir and the NS3 protease inhibitor asunaprevir have shown high cure rates among people with difficult to treat hepatitis C strains (1a and1b) who did not respond to previous treatment with pegylated interferon and ribavirin. Researchers studied the regimen as a dual therapy, as a triple with ribavirin and as a quad therapy with ribavirin and pegylated interferon in people with genotype 1 hepatitis C for 24 weeks. All treatments lasted 24 weeks. People with genotype 1b achieved the following results; In total 78% of people (14/18) who took daclatasvir once a day plus asunaprevir twice a day achieved a sustained virological response 12 weeks following the completion of treatment. (SVR12). In total 65% (13/20) of participants who took daclatasvir and asunaprevir once daily achieved SVR12. Among a mixed group of people with GT 1a and 1b HCV the following results were achieved: Quad therapy, using asunaprevir once a day: SVR12 95% (19/20). Quad therapy, using asunaprevir twice a day: SVR12 95% (20/21). A fifth treatment group containing patients with GT 1a and 1b received triple therapy of asunaprevir once a day, asunaprevir twice a day, plus ribavirin. In total 56% of people with GT1a and none of those with GT1b experienced viral breakthrough, leading the researchers to decide not to pursue further research of this combination in people with HCV GT1a. Nobody stopped treatment due to side effects. The most common of which were headache, diarrhoea, weakness, fatigue and insomnia.

www.baseline-hep.co.uk

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Faldaprevir plus Interferon/ Ribavirin studied for HIV/HCV coinfection

Faldaprevir is an investigational once-daily oral HCV protease inhibitor being developed by Boehringer Ingelheim. Faldaprevir inhibits NS3/4A, an enzyme critical in HCV replication. Faldaprevir was designed to target genotype (GT) 1 HCV although it has shown preclinical activity against GT-4a, 5a and 6a. Studies of faldaprevir in combination with pegylated interferon and ribavirin (PegIFN/RBV), explore the potential to improve cure rates and shorten treatment duration compared to PegIFN/ RBV therapy alone. In addition faldaprevir is also being assessed in combination with BI 207127, a non-nucleoside thumb pocket 1 inhibitor of the NS5B enzyme as a potential interferon free regimen to treat HCV infection. STARTVerso 4 (Study 1220.19) is evaluating the safety and efficacy of 120mg and 240mg faldaprevir once daily in combination with pegylated interferon and ribavirin for the treatment of HCV GT 1 infection in HIV/HCV coinfected patients. Co-infected patients can either be taking HCV treatment for the first time or be prior relapsers with regards to their HCV, and treatment naive or currently on stable Highly Active Antiretroviral Therapy (HAART). Studies are also being conducted of an interferon- free regimen of faldaprevir in combination with BI 207127 and ribavirin. BI 207127 is a non-nucleoside thumb pocket 1 inhibitor of the NS5B enzyme.7 NS5B is a polymerase enzyme believed to be a key enzyme responsible for HCV replication. BI 207127 works by blocking a specific step in the viral lifecycle, targeting the polymerase enzyme. This consequently prevents HCV from replicating. Currently people coinfected HIV/HCV are not eligible for these trials.

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Introducing: Hepatitis C

Introduction The chances are as a BASELINE reader you may know more about HIV than you do about hepatitis C. Unlike HIV, hepatitis C can be curable for a significant proportion of people. In the UK, more than double the number of people living with HIV (96,000) live with hepatitis C (216,000). Both viruses have similarities in transmission routes, and current estimates suggest 9% of people with HIV in the UK are also living with hepatitis C. The media often refer to hepatitis C as ‘the silent killer’ because it’s possible to live with it for many years without developing symptoms.5 For people who only have hepatitis C, it is possible that it may take 30 years before the liver becomes scarred to the point where cirrhosis develops. But hepatitis C appears to progress more rapidly if you are also living with HIV, potentially leading to a faster time to liver cirrhosis and liver cancer, particularly if you drink more than 50g of alcohol each day. Hepatitis C accounts for 38% of cirrhosis and 44% of primary liver cancer in western Europe. Hospital admissions and deaths from hepatitis C‐related end stage liver disease and liver cancer are continuing to rise in the UK; hospital admissions rose from 612 in 1998 to 1,979 in 2010, while deaths rose from 98 in 1996 to 323 in 2010. Liver disease is becoming a leading cause of death for people living with HIV: nearly 15% of deaths of people in the D:A:D cohort study (23,441 52

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people living with HIV) were due to liver-related causes, with a total of 10% of the deaths related to hepatitis C co‐infection. What is hepatitis C? Hepatitis means inflammation of the liver. Hepatitis C is a blood‐borne virus, which reproduces by making copies of itself in liver cells. A small proportion of people (15‐25%) will naturally clear the virus after a short‐term illness (known as the acute phase). For most people however, the hepatitis C virus remains in the body and without treatment becomes a lifelong illness that causes liver damage. How is it transmitted? Primarily, hepatitis C is transmitted through blood‐to‐blood contact. If you’ve had a blood transfusion or received blood products or an organ transplant before 1992, you may have been exposed to the virus. The virus is transmitted by sharing drug injecting equipment such as needles, syringes, filters or water. Estimates suggest that 45% of people who inject drugs in England are hepatitis C positive, but only half of them have been diagnosed. There has been an increase in the numbers of reported injecting activity among London men who have sex with men who are also users of mephedrone and crystal methamphetamine. The +

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Winter 2013

Robert Fieldhouse

men in one study, who attended services at one of two club drug clinics in London, reported a 30% increase of injecting in 2011 to 80% in 2012; with 70% reporting that they had shared needles. It can be transmitted from a hepatitis C positive woman to her baby. The risk is about 6% if a woman has detectable hepatitis C in her blood. It can also be transmitted by sharing razors, clippers or toothbrushes. Transmission has also been linked to unsafe tattooing practices. Is it sexually transmitted? It certainly can be, though studies in heterosexual monogamous couples suggest a very low rate of sexual transmission. In Western Europe over the past decade, increasing numbers of HIV positive men who have sex with men (MSM) have been newly diagnosed hepatitis C positive. Studies have suggested that rough sex between HIV positive MSM is the most risky activity for hepatitis C transmission. However, researchers found very low levels of hepatitis C in the semen of gay men with hepatitis C, including hepatitis C or HIV/hepatitis C co‐infected men. This has led researchers to conclude transmission most likely depends upon exposure to blood. How common is it among people living with HIV? Overall current estimates suggest that approximately 9% of people living with HIV in the UK are also living with hepatitis C. This includes 7% of HIV positive gay men and 83% of HIV positive injecting drug users. How can I prevent it? If you inject recreational drugs you can avoid www.baseline-hep.co.uk

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hepatitis C by not sharing needles, syringes and other drug paraphernalia with anyone else. This includes tourniquets, spoons, filters and water. If you snort recreational drugs it’s safest to use your own note or straw. Men who have sex with men who are into rougher or group sex are advised to use gloves for fisting, use their own lube, put condoms over sex toys if they are shared and change the condom with each new partner. The good news is that enhanced surveillance of newly acquired hepatitis C infection in MSM provides evidence of ongoing, but declining sexual transmission of hepatitis C in England. Why is genotype important? There are six genotypes (or strains of hepatitis C). If you are diagnosed hepatitis C positive it is important that you find out which genotype of the virus you have. The genotype can influence the likelihood that you will clear the virus and could influence the length of time you will need to take treatment. Genotypes 1 and 3 are the most common in the UK. How is hepatitis C treated? For many years treatment has involved a combination of two NICE recommended medicines: pegylated interferon injections and ribavirin tablets. Interferons are human proteins that directly inhibit viral replication and stimulate the body’s immune response. Your chances of clearing the hepatitis C virus depend on many factors. People living with both HIV and hepatitis C have been shown to be less likely to clear hepatitis C compared to people who only have hepatitis C. And co‐infected people with genotype 1 hepatitis +

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C appear even less likely than others to clear the virus with treatment compared with people who have genotypes 2 or 3. Additional treatments are available for people with hepatitis C genotype 1 that when combined with pegylated interferon and ribavirin, may increase the likelihood that the virus will be cleared. The numbers treated for hepatitis C remain low when compared to the number of people living with chronic hepatitis C. In England, an estimated 27,500 patients were treated between 2006 and 2011 with pegylated interferon as part of NICE recommended combination therapy, yet 216,000 people remain chronically infected. What are the implications of also living with HIV? The British HIV Association (BHIVA) currently recommends that everyone living with HIV be screened for hepatitis C antibodies at least once a year. However, a 2009/2010 audit by BHIVA suggested only 66% of clinics report doing so. Research has shown that being on appropriate HIV treatment and keeping your CD4 count high whilst cutting down on alcohol could have a beneficial impact on liver fibrosis progression in people with both HIV and hepatitis C. Are there advantages to being diagnosed during the acute phase? If you are diagnosed with a new hepatitis C infection in the first six months following exposure to the virus it may be possible for you to take a shorter course of treatment than you would require if the infection becomes ‘chronic’. You should discuss the pros and cons of starting treatment or waiting with your healthcare team. 54

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How can I look after my liver? The best advice we can give is to cut down or avoid alcohol completely. In a future edition we will look at the roles lifestyle, diet and exercise can play in keeping you healthy if you are living with HIV and hepatitis C. If you are not vaccinated against hepatitis A and B, discuss with your doctor about getting vaccinated. Can I get re‐infected with hepatitis C? Unfortunately, yes. People who have naturally cleared the virus are still at risk of acquiring the virus again if they are re‐exposed to it. It’s the same story with people who have been successfully treated for hepatitis C. Reinfection is a reality. Where can I get I get more information? (some options are shared below, this is not an exhaustive list) www.hepctrust.org.uk www.hivandhepatitis.com www.hepatitisscotland.org.uk www.nhs.uk/hepc www.britishlivertrust.org.uk www.haemophilia.org.uk www.helpeverypersonc.co.uk This article was commissioned and sponsored by Janssen‐Cilag Limited (Janssen). The views expressed are those of the author. Janssen is one of the world’s leading research based pharmaceutical companies with a heritage of innovation in HIV. The company seeks to be an innovative and socially responsible participant in the response to HIV/AIDS in order to improve the lives of those living with HIV and prevent the further spread of the virus. PHGB/HEP/0213/0250, February 2013 +

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Winter 2013

Steve Akehurst

Whatever you’ve done. you. Whatever life’s done to Call Samaritans. ure. press No No judgement. We’re here for you. Any time.

08457 90 90 90* www.samaritans.org

A registered charity

* Please see our website for latest call charges

SAM_570_NetworkRailAds_Workman_v2.indd 1

In partnership with

15/02/2013 11:01:53

Where Pigs Fly In late 2010, a small group of gay men living with HIV, HCV and HIV/HCV co-infection met around a table in a Brixton town house to lament the risible state of HIV prevention. From this sigh of despair their thoughts turned to why this was and fixed on two areas: the successes and failures of agencies charged with delivering gay men’s health, and the variability of HCV relevant and appropriately targeted information. However, these conversations didn’t remain maudlin for long. An air of excitement quickly took over as issues and solutions were discussed with a passion and intelligence reminiscent of the powerful and effective grassroots HIV/AIDS activism of the 1980s and 1990s. Within a few months, a small funding application had been completed for a user led project to provide an alternative to the dry, dreary and lack lustre sexual health and health promotion information. We wanted to focus on HIV and HCV, barebacking, and recreational drug use (crystal meth and mephedrone specifically), through a straight-talking website at its heart. With a combination of text, photos and film, we wanted the site to be intuitive, for there to be connectivity between subjects recognising that gay and bisexual men’s needs are many and complex, and cannot be dealt with by the simple binary sites currently available. Though we had hiccups along the way - losing volunteers through ill health, and a funding application mired in EU minutiae - enough of us remained to keep the flame alight.

waiting for the funding pistol. Our aims are broadly intact, but our ambition has evolved. While there is a focus on HIV and HCV we have widened our project, making them part of a larger groundbreaking dedicated online ‘encyclopaedic life manual’ for gay and bisexual men. With over 86,000 words drafted to date, over 300 topics will be organised into 6 key areas:

“I’ve volunteered for well known HIV/ AIDS charities since the 90s but there’s nothing like this going on anymore. Been writing text and researching Internet sites for the 3FP website for six months and feel what I’m doing really matters.” David, Volunteer (3FP Website)

YOU inc: identity, sexual orientation, comingout; LGBT history, culture, equality; physical/ mental health; nutrition, exercise. MEN inc: meeting men, friends, partners, and relationships; abuse; gay scene(s); and ageing. BODY inc: basic anatomy, DIY check-ups, and personal-hygiene. SEX inc: sensuality, eroticism, practices, promiscuity, safer choices. STIs inc: A-Z, transmission, prevention, treatment. RECREATIONAL DRUGS inc: A-Z directory, definitions, the law, harm-reduction, prevention, and treatment. The project will also break new ground in that it will also be a hub to alternative and indepth sources of information, advice and support drawn from across the Internet, the ‘best bits’ from

Fast forward to 2013 Fast forward to 2013, and the project is now on the starting block, a revised 10k application 56

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Winter 2013

Patriic, Mark, Simon and David

cyberspace if you will. If we can’t help you we’ll direct you to someone who can! In some ways, the key element is the use of film that we’re most passionate about designed to both educate and entertain; as well as promote the project across the web when they go viral!

“When volunteering seems to be more about stuffing envelopes and licking stamps it’s weird holding a boom mic and these guys used the sound I recorded.”

Reyes, Volunteer (My Friend London Friend)

A project in two halves Though one project, our project is comprised of two distinct halves: 3FP.CO.UK the website, and THREE FLYING PIGLETS which makes short films and viral ads for it. As we search for funding, we are not standing still. THREE FLYING PIGLETS has been developing its filmmaking skills by making affordable short films for the LGBT community. We make no bones of the fact that we are new to filmmaking but as we build our portfolio, and with the acquisition of new equipment recently, our skills are improving in leaps and bounds. Our portfolio Our portfolio includes 3 animation shorts and 2 spoof ads for men’s fragrance that visibly demonstrate our ethos to make films that are rough, raw, and real. When the animations were first shown, to a selected yet unsuspecting audience, the response was a combination of slack-jawed amusement, horror and puzzlement. www.baseline-hep.co.uk

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It was a tad surreal having to explain that the cat was, in fact, animated and therefore not harmed in the making of the film. The film of which we are most proud is CRABS AWAY! a humorous look at this common STI. It’s been universally praised for finding the right balance between humour and being informative, and while we think it could be a few minutes shorter we were surprised to find that our younger audiences watched the entire 9 minutes; something that surprised us in this multimedia age of ever decreasing attention spans, and which we’d like to think shows imaginative and engaging story telling. Throughout we’ve tried to engage the audience in a visceral but humorous way. We don’t want to give you too much detail because the central aim of our work is to get people looking at our films but let’s just say exploding cats, liquidisers and large erections all feature prominently in the animated section of our portfolio. You have been warned. +

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Showing that we are truly versatile, in 2012 we made a promotional short film for London Friend as part of its 40th birthday, still available on the front page of its website. 2013 is looking equally good with a short film for a drugs agency currently in production, while continuing to experiment with new ideas that will inform and challenge future projects. This February we are part of Camden & Islington LGBT History Month. We have several films scheduled for this year, including THE APPOINTMENT, a dark perverse and comic tale about STIs, and THE ANGEL; a crystal meth awareness short. Lights, camera, volunteers! What’s been most exciting about this work is that it’s all been created by volunteers, both in front of - and behind the camera some of whom are living with HIV or HCV, or both. Notably, we are attracting younger volunteers who didn’t think volunteering could be such fun in addition to the older, more experienced volunteers who have felt increasingly excluded by the professionalisation of HIV/ AIDS field. Finding volunteers to appear behind the scenes (lighting, sound, clapperboard, catering, 58

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runners and so on) is easier than getting men to appear in front of the camera. The issues are more complex especially given our subject matter is often a heady cocktail of drugs, sex, and HIV/ HCV. They quite rightly consider how they wish to be seen and so more often than not decline to be bounced across YouTube, however wellintentioned the film. So we are always grateful to those that do, and hope that in so doing they are inspiring a new generation of gay men to become active in their lives, and in their communities, be they based on geography, sexual preference, or HIV/ HCV status. As with so much of life it rarely goes to plan, but we’ve managed to keep the aim, grow the ambition, and produce a not insignificant body of work. Our wish for 2013 is that we find funding so that we can continue what we think is pioneering and much needed work because, in our world:

pigs fly!

To contact/for more information threeflyingpiglets@gmail.com threeflyingpiglets.co.uk Facebook: Three Flying Piglets Twitter: 3flyingpiglets +

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Winter 2013

www.baseline-hep.co.uk

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Large Outdoors

Begin your adventures here… New Research Reveals - Walking Is Better For You Than The Gym

Leading an active lifestyle comes with huge benefits, not only do you feel fitter and healthier but the mental health benefits of exercise are well documented. Large Outdoors is one of the UK’s largest online outdoor pursuits groups, running events for all levels across the UK. Whether you fancy a gentle stroll on a Sunday or want to take on a large mountain challenge they have an event for you. Events for you: Large Outdoors is a membership based group who are there to support you as you develop new skills and sporting interests, all in a friendly and welcoming environment. Events are graded from Gentle through to Advanced so you can pick and choose something which suits you. Friendly and welcoming, Large Outdoors is open to anyone over 18, regardless of gender, race, sexuality or status. About 80% of membership is female and the company run women only weekends.With an openly gay founder the group is also very gay friendly. Gareth Williams (also the designer of Baseline Magazine), founder of, Large Outdoors said, “Walking is an excellent way of keeping fit and healthy and is accessible for people of all ages and abilities. To help our members to get fit and stay active we run social walks and walking weekends across the country, making walking easy, accessible and safe and helping people to get out and enjoy the British countryside. There are so many great places to explore and with events across the country you are bound to find something to suit your level and ability.” Discretion is absolutely assured; Gareth has worked within the HIV community for years and

understands the importance of people fitting in without having to disclose their status. Fundraising for charity: Over the last three years Large Outdoors has worked with charities, from large national organisations through to smaller local groups and individuals, to help them fundraise and raise awareness. To date Large Outdoors has helped to raise over £125,000 for charities. Core to this is helping to minimise the financial risk to the organisation from the event. Large charities and groups may wish to have an exclusive challenge event and smaller groups may wish to book a few places on Large Outdoors’s existing schedule of open events. From climbing Mount Snowdon to completing the Yorkshire Three Peaks, from walking the Jurassic coast to a family friendly 10km walk in your local town. Their open events are also available to individuals who may wish to fundraise for the charity of their choice. Costs for exclusive walking events start at just £150. Away trips for service users: Large Outdoors has worked with a number of HIV charities as well as with BASELINE Magazine to run retreat trips away to some great locations. The focus for these events has been to help clients discuss issues around their status or simply to meet people in similar situations all in safe and secure environment whilst enjoying the many many health benefits of being outdoors. If you are interested in attending an event or would like to see how Large Outdoors can help your group please visit their site: www.largeoutdoors.com

Confidential Support & Advice Barnsley’s 1st local support group, supporting people living with HIV in our Borough

Confidential Support & Advice

For further information contact

Barnsley’s 1st local support KPS Trebullom is a Respite and Retreat B&B for people affected by HIV set in the Cornish group, supporting people countryside. Our recent award from the Big Lottery Fund enables us to offer living with HIV in KPS Enabling Futures Project Adult Personal Development Breaks our Borough3 nights/4 days full board accommodation. For positive about change

www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710

For further information contact

me positive about change

www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710

HIV+ clients who are thinking about returning to work, retraining or volunteering, who would like to know how the changes to the benefits system will affect them, and who would gain from attending workshops to help them move forward. Workshops on: Changes to the benefits system – what to expect Disclosing status – how best to do it The Equality Act 2010 – understand your rights Moving towards voluntary work or employment Plus a therapy, craft workshop and trip All fully funded Summer Camps For children aged 5 – 15 and one parent/ guardian. Fully funded weekend activity breaks

T: 01566 86378 E: sjarvis@kpsdirect.com www.kpsdirect.com

‘

Are my mood changes because of Atripla?

I have been taking Atripla for almost 4 months and my mood has gradually been getting worse. I don’t feel like myself anymore. I feel empty inside and I am becoming short tempered with the people around me. Even when I laugh I feel myself welling up. I’m tired all the time and have no energy or drive to do anything. Is this due to the medication?

i-base response: Hello, Thank you for your email. I’m very sorry to hear about the problems you are having. If these mood changes have come on since you changed there is a good chance this is a side effect of Atripla. One of the drugs in Atripla- called efavirenz- is linked to mood changes and sleep disturbance. These side effects are also, less often, reported with another drug called rilpivirine. Taken together these side effects are called central nervous system or CNS side effects. Nearly everybody will get some of these side effects when they start taking efavirenz, but for most people these will be mild and easy to manage. This may mean experiencing some strange dreams, get more upset than usual or getting more worried. These side effects can occur after a few hours or after several days and are more common over the first few weeks of treatment. They usually become easier to tolerate. CNS side effects can lead to or exaggerate depression, including mood swings, and in extreme cases suicidal feelings and paranoia. It is very important therefore that you are aware that efavirenz could be the cause and that you are not 62

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‘going mad’. Sometimes a friend can tell you if your behaviour has changed. The way you are describing your symptoms is the way you have to tell your doctor about this. In order to understand how you feel, your doctor needs to understand the impact of these changes on your everyday life. Efavirenz is not usually recommended for someone who has a history of depression or psychiatric illness, but side effects are common, even in people without this history. As there is no test to identify who is likely to get problems; the only way to know is to try, and then switch if side effects become a problem. Higher drug levels may increase the chance of side effects and this may be related to low body weight or African race. Approximately 10% of Black African people process efavirenz more slowly. If side effects reduce your quality of life, it is usually easy to switch to alternative options. If you’re not happy with how you feel, then you should speak to your doctor about changing treatment. UK HIV treatment guidelines from BHIVA (the

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Winter 2013

Rebecca McDowall

i-base 0808 600 8013

ask a question

by email, online or phone

British HIV Association) include the following preferred alternatives to efavirenz: atazanavir/ ritonavir, darunavir/ritonavir, or raltegravir. There are other options available. Talk through the choices with your doctor and ask about the pros and cons of each option. These involve taking a couple more pills each day (compared to Atripla) but your quality of life will be better. Some people may be able to use a new onepill combination called Eviplera. This is a fixeddose combination of rilpivirine, tenofovir and FTC. There is a possibility of similar CNS side effects with rilpivirine, although these are less common than with efavirenz. Eviplera needs to be taken with food to get the needed drug levels (compared to efavirenz which is taken at bedtime without food). You do not have to continue with efavirenz to prove anything to yourself or your doctor. If you know something is wrong, donâ&#x20AC;&#x2122;t worry about asking to change to something else. Most people find that within a few days they are back to normal, and are amazed at the impact on their quality of life and at how long they put up with unnecessary problems. www.baseline-hiv.co.uk

questions@ i-Base.org.uk www.i-Base.info/qa

0808 800 6013

take control of your treatment

New point-of-care CD4 test offers hope of better management of mother-to-child transmission of HIV HIV targets and destroys the immune system’s CD4 T-cells, and a low CD4 T-cell count indicates advanced HIV disease. Monitoring of CD4 levels has a key role to play in deciding the best time to start antiretroviral treatment, and an excellent example of this can be seen in the April 2012 WHO guidelines for the prevention of motherto-child transmission, where two out of the three treatment options described rely on CD4 levels to determine the start of either antiretroviral prophylaxis or lifelong treatment. Until recently, CD4 measurement has depended on expensive laboratory-based equipment and so has been largely inaccessible in remote and resource-poor settings. A newly developed, affordable pointof-care test, VISITECT® CD4, offers hope of better HIV management and prevention of new infant infections, particularly in developing countries where the burden of HIV is greatest. Prevention of mother-to-child transmission The World Health Organization (WHO) estimated that 3.4 million children were living with HIV at the end of 2011, 91% of them in sub-Saharan Africa. In many cases, the infection was transmitted from mother to child during pregnancy, delivery or breastfeeding. Effective interventions could reduce the risk of mother to child transmission to below 2% – in the UK it is less than 1% – but, in resource-poor countries where the HIV burden is highest, coverage of these interventions is low. In Use of Antiretroviral Drugs for Treating Pregnant Women and Preventing HIV Infection in Infants, the WHO outlines strategies for the prevention of mother-to-child transmission (PMTCT) of HIV, concentrating on the need to distinguish between 64

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‘An accurate, low-cost pointof-care (POC) CD4 test suitable for use in low resource settings would enable assessment of CD4 count at first antenatal visit.’ treatment and prophylaxis. Lifelong antiretroviral therapy (ART) is recommended for women with CD4 counts ≤350 cells/mm3 to protect their health and for effective PMTCT. For women with CD4 counts >350 cells/mm3 – who are not eligible for treatment according to current criteria – the guidelines recommend starting antiretroviral (ARV) prophylaxis early in pregnancy, and continuing to provide prophylaxis to either the mother or child for as long as the mother is breastfeeding. HIV positive women living in the UK are not recommended to breast feed their babies. One of three strategies may be adopted, two of which rely on measurement of CD4 count. Option A provides ARV prophylaxis to HIV positive pregnant women antenatal, during labour/delivery, and for a short period after childbirth, as well as antiretroviral infant prophylaxis during breastfeeding; Option B offers the mother triple ARV prophylaxis from the antenatal period up until breastfeeding has ceased, when prophylaxis is discontinued and CD4 count is then monitored, initiating lifelong ART only if the mother’s CD4 count falls below 350 cells/mm3; Option B+ supplies lifelong ART to all HIV positive pregnant women, irrespective of CD4 count, an option which might currently not be sustainable in all settings. Because the majority of infant HIV transmission occurs among women with CD4 counts below 350 cells/mm3 it is especially

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Winter 2013

The Burnet scientists behind VISITECT CD4: Mary Garcia, Professor Suzanne Crowe AM, Associate Professor David Anderson and Nadine Barnes. important that these women are identified quickly so that PMTCT can be initiated as early as possible. CD4 count has, until recently, been monitored by flow cytometry, a cell counting technique which requires expensive, sophisticated instruments and highly trained laboratory personnel, restricting testing to centralised laboratory services where turnaround times are usually between two weeks and two months. Women must return to the clinic for the results, causing a significant loss to followup and treatment delays, particularly in remote settings where people often need to travel long distances on foot to access health services. It is also common for women to attend antenatal care (ANC) services just once, often very late in a pregnancy, which leaves no time for laboratory-based CD4 testing. Consequently, fewer than 30% of HIV positive pregnant women are currently tested. An accurate, low-cost point-of-care (POC) CD4 test www.baseline-hiv.co.uk

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suitable for use in low resource settings would enable assessment of CD4 count at a first antenatal visit, providing same day knowledge of CD4 status. Armed with this prompt information, the most appropriate treatment strategy could be chosen and begun immediately, with the likelihood that the uptake of ARV intervention would increase and loss to follow-up associated with laboratory-based testing would decrease. Point-of-care testing – a big step forward Scientists at the Burnet Institute in Melbourne, Australia, have recently developed an affordable POC CD4 test aimed at reaching HIV patients in even the remotest locations. The VISITECT CD4 Test, manufactured by global diagnostics organisation Omega Diagnostics Group PLC, UK, was launched to great acclaim at the AIDS 2012 Conference in Washington. This affordable, easy

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touse, semiquantitative lateral flow POC CD4 test, can determine CD4 T-cell levels from a finger-prick blood sample, enabling same day assessment of CD4 count even in remote rural areas in resourcelimited settings. A straightforward, visual ‘treat’ or ‘do not treat’ result is generated in just 40 minutes, enabling HIV positive pregnant women to commence critical antiretroviral interventions, either for their own health or to prevent mother to child transmission, before leaving the clinic. Minimal training is required and no instruments are necessary, eliminating the need for sophisticated equipment, expensive reagents – substances used to produce a chemical reaction – and highly trained personnel, and offering a cost-effective means of obtaining immediate CD4 results. Plans for high volume production are now well underway, with facilities already available to cover production for Europe, Africa, the US and China, and further facilities planned for India and Brazil. With the support of a $250,000 grant from the Saving Lives at Birth – Grand Challenges for Development initiative, the Burnet Institute is about to undertake a field validation study to establish the performance of the VISITECT CD4 Test compared to flow cytometry methodology and the instrument-based POC CD4 test, Pima™ (Alere). The study will assess the feasibility and acceptability of using the VISITECT CD4 Test during first antenatal clinic visits and will pilot the potential impact of using POC CD4 testing rather than a laboratory-based CD4 test. It will be implemented across three sites in Kenya – a rural public district hospital, an urban health centre, and a private health clinic – as well as in a high throughput reference hospital in South Africa. Each of the facilities selected currently provide HIV screening at the first antenatal visit and PMTCT services, with access to quality-assured CD4 testing by flow cytometry, as well as adult and paediatric HIV treatment and care services. The 66

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study will follow HIV positive pregnant women over 18 years of age from their first antenatal clinic visit until delivery.

‘The provision of same day CD4 count results promises to have a great impact on HIV service delivery at the antenatal clinic, increasing coverage of critical life-saving ARV interventions and generally strengthening adult ART programmes.’ Participants will provide a finger-prick sample for POC CD4 tests (VISITECT CD4 and Pima), as well as a 5 ml standard venepuncture sample of whole venous blood for an additional, laboratory-based VISITECT CD4 Test and analysis by flow cytometry. Trained nurse-midwives will assess CD4 count at the antenatal clinic by POC testing with both the VISITECT CD4 Test and Pima, and a laboratorybased VISITECT CD4 Test and flow cytometry will be performed by trained laboratory technologists. Burnet plans to assess the misclassification, sensitivity, specificity, and negative and positive predictive value of the VISITECT CD4 Test against the gold standard of flow cytometry, with a secondary comparison to Pima, and the acceptability of both the VISITECT CD4 Test and Pima as POC tests in resource-constrained settings will be investigated. The impact of POC CD4 testing rather than laboratory-based testing will be determined by studying the reduction in time between the antenatal care visit and ARV initiation, as well as any change in the proportion of women lost to follow-up. Burnet anticipates a successful field trial, followed at a later date by a large-scale impact study. In addition to the Saving Lives at Birth study, Burnet proposes a further study in Zimbabwe,

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Winter 2013

VISITECT CD4

involving HIV positive men and women (pregnant and non-pregnant), which will be predominantly for validation of the VISITECT CD4 Test compared to Pima and flow cytometry. A number of partners have expressed an interest in this study, including part-sponsor Omega Diagnostics, and UNICEF. Conclusions Accurate assessment of immune function in HIV positive pregnant women is critical to improving health outcomes for women and reducing new infections among infants. In difficult to reach, remote areas with limited resources, the quick, low-cost and easyto-use VISITECT CD4 Test could prove a valuable asset in the integration of PMTCT/HIV services with maternal and child health services. No electricity, instruments or maintenance are required, and its lateral flow technology – similar to a home pregnancy test – is already very familiar to healthcare workers using other POC tests, such as HIV rapid tests. The provision of same day CD4 count results promises to have a great impact on HIV service delivery at the antenatal clinic, increasing coverage of critical life-saving ARV interventions and generally strengthening adult ART programmes, while improving quality of care and increasing uptake of existing treatment. There are also positive financial implications; determining HIV status and CD4 count at the www.baseline-hiv.co.uk

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same visit will reduce client costs and the loss of patients to follow-up, and has the potential to reduce new paediatric infections and HIV-related maternal mortality. Point-of-care CD4 testing should allow a viable integrated solution to be established, increasing the demand for, and improving delivery of, PMTCT services, to the benefit of the entire population. This product is made possible through the generous support of the Saving Lives at Birth partners: the United States Agency for International Development (USAID), the Government of Norway, the Bill & Melinda Gates Foundation, Grand Challenges Canada, and the UK Government. It was prepared by Burnet Institute and does not necessarily reflect the views of the Saving Lives at Birth partners. © 2013 kdm communications limited Editorial contact for further information or follow-up Sarah Ballard at kdm communications limited, St Neots, UK. Tel. +44 (0)1480 405333 Fax: +44 (0)1480 477833, email ideas@kdm-communications.com ++

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Joel Korn

GRINDIN’ to a Halt Sitting at home on a Friday night I decided I need a distraction. I logged into Grindr, the gay cruising site. Nothing occurred for some time. There were men of all shapes, sizes, some wanting NSA ‘no strings action’, others saying ‘boyfriend wanted’ or ‘new friends needed’. There was silence for some time and then my phone vibrated. I was of course flattered; a 25 year old contacting someone nearly 10 years his senior. The conversation went like this: Fred25: ‘Evening handsome how’s you?’ JK78: ‘Thanks for the compliment (blush), and how are you?’ Fred25: ‘Are you free tonight and where are you based?’ JK78: ‘North London’ Fred25: ‘Not far…’

Fred25: ‘What you mean you haven’t got HIV?’ JK78: ‘No I am HIV+. Undetectable means my HIV treatment is working, my bloods are stable, but safe sex is the best way to protect you and me.’ Fred25: ‘I don’t want to suck you with a condom. You see I knew I would be HIV+ by the time I’m 30.’ JK78: ‘You mean HIV is part of growing older as a gay man?’ Fred25: ‘Isn’t it?’

JK78: ‘What are you looking for?’

JK78: ‘It does not have to be, NO!’

Fred25: ‘A glass of wine and then fun.’

Fred25: ‘Want me to come over then?’

JK78: ‘Do you travel or accommodate?’ Fred25: ‘I can travel, you’re not far, let me have a shower and come over.’ JK78: ‘Before you come over I should tell you I’m HIV+.’ Silence for 10 minutes… Phone vibrates… Fred25: ‘I’ve been speaking to my flat mate, we we’re discussing how many men we have slept with this year.’ JK78: ‘Right, nice to hear from you again.’ Fred25: ‘Sorry no offence, we we’re saying we must have slept with at least 30 men this year between us. So it is surprising that we have not spoken to or met someone HIV+ before.’ 68

JK78: ‘Perhaps they had not told you. As long as we practise safe sex it is less risky. I’m undetectable so this means my HIV is under control.’

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JK78: ‘Can I think about it?’ Fred25: ‘I hope I didn’t upset you.’ JK78: ‘You didn’t but can I sleep on it?’ I identified so much with the conversation, one part of me wanted to take care of this young gay man, the other could be remember being 25 years old and naive. So with World AIDS Day fast approaching, I have to be curious what can we do to make people more HIV aware? What responsibility can I as a part of the community living with or affected by HIV take? How do I take my stand and get my voice heard? www.2-life.co.uk +++-

www.baseline-hiv.co.uk

VOLUNTEERS WANTED

Are you looking for a challenge in 2013 and wondering how you can make a real difference? Volunteers needed for CHIVA’s annual 5-day support camp from 29th July -3rd August 2013 for 100 teenagers living with HIV. We’re looking for enthusiastic, committee volunteers to assist our small staff team. You will have an integral role working with the young people, ensuring camp is a fulfilling and rewarding experience for them. In return we believe you will feel equally rewarded by volunteering, gaining new skills, working in a team and by contributing to improving the lives and well being of young people living with HIV. You will receive full training and support in this role and all out of pocket expenses will be covered. The camp also offers an invaluable opportunity for health professionals to volunteer, to gain practical understanding and experience of aspects of living with HIV that would seldom be witnessed daily at work. To apply visit: www.chiva.org.uk/supportcamp For further information or to discuss further call CHIVA projects team 0117 9105226 or email Amanda.ely@chiva.org.uk

Does life feel like it’s getting on top of you? Could you benefit from a space to take some time-out... to explore your thoughts and feelings? I am a qualified counsellor based in Finchley, North London. I am committed to providing counselling, group therapy and training in a safe, confidential and non-judgemental environment. For more information please contact Joel on 07787 226 376 or email kornjoel@hotmail.com

www.2-life.co.uk 2-Life is the trading name of all services offered by Joel Korn: Counselling, Group Therapy and Training.

Charity No: 1122356

Are you HIV positive with an HIV negative partner or HIV negative with an HIV positive partner? Join the Partner study to help researchers learn more about the risk of HIV transmission to HIV negative people when their HIV positive partner is on treatment It will also explore why condoms are not used consistently in some partnerships For more information, including a list of participating clinics across Europe see www.partnerstudy.eu or contact Dr Alison Rodger at alison.rodger@ucl.ac.uk

or Simon Collins at

simon.collins@i-base.org.uk

Maurice Greenham

National Long Term Survivors Group Celebrates 20th Anniversary Celebration and commemoration were jointly featured at the special September 2012 Living Proof weekend to mark 20 years of the NLTSG’s foundation in 1992 and its survival. Normally the autumn Living Proof weekend is the quietest, not so this year: there was a full house with no cancellations on account of a member’s health.

‘The celebratory weekend also saw the launch of a new means-tested fund ‘The 1992 Fund.’ This inclusive scheme aims to assist new and existing members to attend a Living Proof weekend who would otherwise be unable to afford to come.’ After Friday evening’s dinner we to a look backwards to the advent of the epidemic in America with the film ‘We Were Here’ that documented the AIDS crisis in 1981 San Francisco. Despite technical problems which resulted in the film being seen in episodes rather than continuously, its impact seemed undiminished and left viewers in no doubt about the dramatic changes over three decades that have resulted in the prospect of a cruel, humiliating death from AIDS, becoming the long-term manageable condition that describes living with HIV today. Tom and Steve as two of the co-founders of the group performed the second commemorative act by symbolically planting a tree in the gardens of the rural retreat which has become the home for the group’s Living Proof residential weekends. Everyone participated in what turned out to be a jolly rather than a sombre occasion and which was blessed with glorious sunshine. This section of the gardens has now been dedicated to the group. 70

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By way of celebration, the meal on Saturday evening was preceded by champagne reception. This was a most enjoyable social gathering with a choice of real champagne (donated), Bucks Fizz or fruit juice. Along with the drinks came a wonderful variety of hot and cold canapés. Perhaps the success of the event should be judged more by the quality and quantity of interactive exchanges taking place, rather than the delicious food and drink – great as they were.

A 20th Birthday Card and Cake were unexpected and welcome additions to the celebrations. The cake was ceremoniously cut by Trustees after Saturday dinner then divided up later in the bar. The celebratory weekend also saw the launch of a new means-tested fund ‘The 1992 Fund.’ This inclusive scheme aims to assist new and existing members to attend a Living Proof weekend who would otherwise be unable to afford to come. It is hoped that small regular donations will help to maintain this fund. Altogether this was a worthy celebration of a remarkable 20 years of the National Long Term Survivors Group’s history. For more information about the NLTSG please visit our website: www.nltsg.org.uk To donate, please go to: www.nltsg.org.uk/donations.htm

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Winter 2013

@PositivelyUK

Championing the rights of people living with HIV +ve

+ve +ve

HIV +VE PEER SUPPORT in SOHO www.GMG.org.uk

WHAT WE DO:

.. . . .

Offer diverse, non-judgmental peer advice Provide space to relax and express yourself with other HIV +ve gay men Check-in, followed by discussion on common themes or urgent topics Discuss living with the virus and living as +ve gay men Non-funded, independently run and facilitated by established members

positivelyuk.org Free downloads: - The Pregnancy Journey with HIV - Making the most of your GP - Positively UK Magazine info@positivelyuk.org 020 7713 0444

www.positivelyuk.org

WHY DO WE MEET?

. . . ..

Let off steam about, and help find selfacceptance for being +ve Combat isolation of dealing with HIV by ourselves Talk about medications (starting/taking) and coping with side effects Discuss stigma or experiences of disclosure For friendship and fun, and socialise/network with other HIV +ve gay men

WHERE & WHEN?

Every Monday 5.30-8pm in Soho, London (apart from Public Holidays)

WANT TO ATTEND A MEETING? If youâ&#x20AC;&#x2122;re an HIV +ve gay man, we would be delighted to welcome you at one of our meetings. Use the contact form for meeting details at our website: www.gmg.org.uk/contact.php

www.volunteerpositive.org

Congratulates

licy, ropean Po lthcareâ&#x20AC;&#x2122;s Eu n, ViiV Hea so ad w Le La y a ac Ann and Advoc Community

Alice Welbourn & Sophia Forum for raising gender-based violence with parliamentarians.

Paul Decle on achieving charitable status for the patient user group netork www.forum-link.org

Karl Cooper of Plus Me in Barn Lee Hardman on sley on GHT debt worker nt for one of their receiving The Duke of York Community gra 5 44 ÂŁ2 a ng securi Initiative Award clients

Should you disclose your HIV status to your bank or financial adviser? There is no doubt that the introduction of Life Assurance for the HIV community over the last three years has been an encouraging sign that the financial services industry is starting to be more friendly towards the HIV community. Many of you will be aware that over the last two decades both banks and insurance companies have treated people with HIV very poorly. Our latest survey results published in the second half of this article give an indication of the effect this attitude has had on the HIV community. It’s not uncommon for HIV positive people to approach us after they have already been to their bank or existing financial adviser for either a mortgage or life assurance. Michael and Natalie approached us for Life Assurance quotes after reading about us in the last issue of BASELINE. Michael said; “We’ve been offered a mortgage and life assurance by our bank manager, but we’re in a difficult position because one of us is HIV positive. We don’t really want to disclose this to our bank and would like to avoid doing this if at all possible”. Natalie continued; “Everything was fine with our mortgage application during the first meeting with him and then on our second meeting he started asking us about our health history and HIV status. The questions he asked were on a Life Assurance application. Do we have to take Life Assurance through our bank?” Some advice for people worried about disclosing their HIV status to banks and insurance companies. Many banks and building societies have a policy of offering insurance products with every mortgage they arrange. This means that if you are HIV positive you may be faced with answering 74

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questions about your health history and HIV status at some point during the mortgage process.

‘Unusual Risks are specialists at looking after the HIV and Hep C communities and will be able to help you find Life Assurance or Mortgages without answering the personal questions from your bank.’ In the majority of cases you are not obliged to take Life Assurance through your bank or the financial adviser they may have introduced you to. The majority of banks do not offer Insurance products to HIV positive people, so if you need HIV Life Assurance you should seek Independent advice. Unusual Risks are specialists at looking after the HIV and Hep C communities and will be able to help you find Life Assurance or Mortgages without answering the personal questions from your bank. We are able to help you find Life Assurance to protect your mortgage, children or family. Our latest research shows that 50% of HIV positive people have surrendered Life Insurance policies following their diagnosis in the past, even though they were likely to be covered. On average each respondent to our survey had surrendered or cancelled almost two insurance products. The fact that people with HIV have cancelled insurance policies in the past due to their diagnosis and also in our previous surveys that only 20% of HIV positive people currently have Life Assurance would indicate that there is a growing need for Life Assurance within the HIV community.

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Winter 2013

Chris Morgan And Michael and Natalie? We arranged two Life Assurance policies both with sums assured of £150,240 in line with their new mortgage. The first policy was Life Assurance and Critical Illness policy over 22 years for Martin who is HIV negative for £40.58 per month. The second was a HIV Life Assurance policy for Natalie at a premium of £54.30 over 10 years, which means a total monthly premium of £94.88. The original quotation we were shown from their bank was for a total premium of £128.46 per month, meaning we also saved them £33.58 per month. Unusual Risks make donations to charities NAM/ AIDSMAP and Hep C Trust from every Life Assurance and Mortgage we arrange. We have brochures and PDF Fact Sheets now available to charities, support workers and medical professionals.

Chris Morgan is the Marketing Manager of Unusual Risks Mortgage & Insurance Services. www.unusualrisks.co.uk, Editor of Positive Finance Magazine www.positivefinance.info and was a consultant to the Association of British Insurers HIV Working Group for over five years. He may be contacted by phone 0845 474 3075 or by Email chris@unusualrisks.co.uk BASELINE regularly runs surveys on its website www.baseline-hiv.co.uk Unusual Risks is currently running a survey on access to financial products for people living with hepatitis C. If you are hep C positive, please complete the survey.

Unusual Risks Mortgage & Insurance Services The UK’s Leading HIV Life Assurance Specialists

Call us: 0845 474 3075

Web: www.unusualrisks.co.uk e-mail: enquiries@unusualrisks.co.uk AUTHORISED AND REGULATED BY THE FINANCIAL SERVICES AUTHORITY – please note most buy to let mortgage are not regulated by the Financial Services Authority. Think carefully before securing debts against your home. Your home may be repossessed if you do not keep up repayments on your mortgage. Baseline Ad Unusual Risks.indd www.baseline-hiv.co.uk

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14/07/2011 10:01 75

AIDS Orphan:

International Charity Confronts Challenge of Disclosing HIV Status to Children

‘How do you tell a child who has lost his parents to AIDS that they are HIV positive?’ That’s the tough, emotional question asked by Ian Govendir, who decided to set up AIDS Orphan to provide an answer to that question. The AIDS Orphan charity has been created specifically to meet the challenge of informing a child of their HIV status by trained counsellors at the right time, and in the best way for their emotional development. ‘I never twigged,’ admits Ian, ‘despite working in the sector for 20 years, I never thought about how is that done, passing that information to a young person?’ BASELINE met Ian Govendir as he quietly and gently explained the work of AIDS Orphan. He admits his response was initially an emotional one. It needed to be - a logical approach would have seen him walk away, the issues too large, too far away, too difficult to broach. It needed a bit of a dreamer. He’s creating a charity just as others are folding. However underneath the gentle exterior is a steely resolve. Ian has been Head of Individual giving at the British Red Cross, CEO of the British Lung Foundation and Head of Development at the National Deaf Children’s Society. He has taught marketing and fundraising at London Metropolitan University, South Bank University and the Institute of Fundraising. He has also been HIV positive since 1982. Lulu’s story When asked to explain AIDS Orphan and its works, he answers, ‘Really its kids like Lulu – 76

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hearing her story, I cant explain it better than that. Lulu is only 6, her growth is stunted, her cognitive reflexes are poor and she is HIV positive. In the past she had bronchitis and pneumonia and often missed her meds, but now with a balanced diet and good adherence to her medication, her health improves daily.’ Eventually Lulu will be told she is living with HIV positive and it’s at this crucial point that AIDS Orphan can help. “We are facilitating local hospital nurses to become counsellors, ultimately the message to the child will be how to live a full life with HIV. AIDS Orphan will help support them psychologically and emotionally,” says Ian. The work of CHIVA Africa by Karyn Moshal, a paediatrician at Great Ormond Street hospital and colleagues is invaluable he adds, ‘the evidence suggests that informing kids sooner rather than later, with a parent or close care giver - the better they can cope with their diagnosis.’ Lulu lives in the Kibera township in Nairobi, Kenya, where AIDS Orphan has set up the Neema outreach service supporting 450 orphaned and vulnerable children, aged three to eighteen. The counselling and disclosure work has been led by two volunteer child psychologists from the UK visiting Kenya and India who are also training local staff. The service works in partnership with Little

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Winter 2013

Chris O’Connor Rock, a childhood development and intervention service working in Kibera. Neema offers care, support, health education for the children as well as providing a weekly education scheme aimed at preventing mother to child transmission.

“We are facilitating local hospital nurses to become counsellors, ultimately the message to the child will be how to live a full life with HIV.” The charity is expanding says Ian, ‘Sanjay Bhagani, HIV consultant at the Royal Free Hospital in London and a trustee of AIDS Orphan, met some doctors from India who said they had this medical helpline and they wanted to do some disclosure work with children.’ From this acorn AIDS Orphan now has the Anka Project in Pune, India working with the Muktaa Charitable Foundation - again making HIV disclosure for children, systematic, positive and as sympathetic as possible. In March 2011, a small study of disclosure status in the NGOs working in Pune found that most of these children were not aware of their HIV status. Many of the counsellors on the ground did not feel equipped to handle the issue of disclosure. In 2011, two psychologists from London were invited to work on the Samvad HIV Helpline in Pune, conducting a training workshop on “Psychological issues and status disclosure of HIV infected and affected children.” This training has now seen Samvad expand its range to include tele-counselling in paediatric HIV and now to faceto-face counselling.’ It’s a good ask…and good value The issue now for AIDS Orphan is to expand prudently while consolidating its existing projects – and this needs money. Perhaps this is not the best time to fundraise? Ian has an answer, ‘Well my argument is, I joined the Red Cross in 1992 www.baseline-hiv.co.uk

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was during the last big recession, and what amazed me was despite hard times, donations went through the roof. People who are less well off can have more empathy for others worse off than Ian Govendir themselves.’ Although Ian admits there were other elements in play during the 90’s when he helped British Red Cross raise £30 million, such as working with Diana, Princess of Wales. He is adamant though that AIDS Orphan is a ‘good ask’ in fundraising speak. ‘If you read the charity press, donations last year dropped 20 per cent across the board – but I still believe that if you have a great cause and a great proposition people will still give. We have really low overheads, no paid member of staff - for the valuable work we do it’s incredibly good value.’ That proposition is fuelled by the original dream says Ian, ‘I was working at the National Deaf Children’s Society, and I had an amazing boss there who asked me what I really wanted to do, I told him the idea, he said, “you have to do it”. I didn’t have a name but he said, “it’s obvious it has to be AIDS Orphan.” The name AIDS Orphan he says has not been universally welcomed. “I can understand that, I really can, people have said to me its labelling, but to me it does what it says on the side of the tin, If you were stopped by a chugger (charity fundraiser), and asked for a donation for deaf children - people know what it is; if you ask for a donation for children living with HIV who have been orphaned by AIDS, they know what it is. It’s understandable and that’s important. I’m passionate about the end product, the counselling to the children, that’s the really important part.” www.aidsorphan.net www.chiva-africa.org www.littlerockkenya.org ++

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David Rowlands

Hepatitis C Trust 27 Crosby Row  London SE1 3YD Tel: 020 7089 6220  www.hepctrust.org.uk Helpline: 0845 223 4424 10.30 to 4.30 Monday to Friday British Liver Trust 2 Southampton Road Ringwood BH24 1HY Tel: 01425 481320  www.britishlivertrust.org.uk  Free Helpline: 0800 652 7330

Waverley Care Edinburgh  3 Mansfield Place  Edinburgh EH3 6NB Tel: 0131 558 1425  www.waverleycare.org

Hep C Nomads is an internet forum providing the social side of support for those affected by Hepatitis C. www.hepcnomads.co.uk

Positive Support  Room 2.10  Dalziel Building  7 Scott Street  Motherwell ML1 1PN Tel: 01698 337 195 www.addaction.org.uk

The UK Hepatitis C Forum www.hepcukforum.org

The Samaritans Tel: 08457 909090  24 hour www.samaritans.org.uk Children’s Liver Disease Foundation  36 Great Charles Street  Birmingham B3 3JY Tel: 0121 212 3839  www.childliverdisease.org

The Skipton Fund PO Box 50107, London, SW1H 0YF Tel: 020 7808 1160 www.skiptonfund.org The Haemophilia Society 1st Floor Petersham House  57a Hatton Garden London EC1N 8JG Tel: 020 7831 1020 Freephone information and advice 0800 018 6068 www.haemophilia.org.uk

Ten Support Organisations, recommended by BASELINE Editors.

If you can recommend a local HIV or hepatitis support group email: david@baseline-hiv.co.uk 78

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Winter 2013

nd me a org m a r g a. ll pro ww.bhiv u f e h at w See t r now e t s i reg

ANNOUNCEMENT 19th Annual Conference of the British HIV Association [BHIVA] 16–19 April 2013 Manchester Central Convention Complex Introduction BHIVA is delighted to announce its 19th Annual Conference, which will be held at Manchester Central Convention Complex. Dr Ed Wilkins has been invited, and kindly agreed, to serve as Local Host for this event.

Registration Rates and details can be viewed via the BHIVA website. You can also register online at www.bhiva.org or by using the forms published in the Second Announcement.

Key conference topics: ▶ Five recent papers to change clinical practice ▶ Neurocognitive testing in HIV clinical trials ▶ Generics: how should we use them? ▶ Towards a cure ▶ BHIVA guidelines: HIV/hepatitis co-infection and HIV-associated malignancies ▶ The virtual clinic: HPS in HIV · HIV/HCV co-infection in pregnancy · Drug–drug interactions in renal transplantation ▶ Viral resistance: a look into the crystal ball ▶ Where to next with HPV vaccination: new strategies, new vaccines ▶ Can we live without nucleosides? ▶ Should we wait to treat at 350? ▶ Clinicopathological case presentations ▶ Difficult pharmacology case presentations ▶ TB /HIV co-infection case presentations ▶ Spot diagnosis: tropical STIs ▶ HIV and chronic diarrhoea: case presentations ▶ MDT working: the role of the Advanced Practice Nurse ▶ ART and toxicity case presentations

BHIVA Conference Organiser: Mediscript Ltd, 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD Tel: 020 8369 5380 · Fax: 020 8446 9194 · Email: bhiva@bhiva.org

www.bhiva.org

‘Ex-alien who settled for earth. Ex-singer, bus conductor, hustler and barman. Failing to die of AIDS, ended up as a writer, activist and psychotherapist.’ NAM Editor @guscairns on Twitter

0: new HIV infections 0: discrimination 0: AIDS-related deaths

‘Personally I am yet to hear anyone with diabetes say, it’s like living with HIV.’ Sophie Strachan, Positively UK

“Your first concern is the care of your patients.’ Professor Jane Anderson, Chair, British HIV Association

The vision of UNAIDS. Read Getting to Zero: 2011-2015 Strategy at: www.unaids.org 80

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Winter 2013

CD-4 CELL (AKA “T CELL”)

THE IMMUNE SYSTEM’S WHITE BLOOD CELLS ATTACKED BY THE HIV VIRUS.

LIVE HIV NEUTRAL.

Learn the ABCs of HIV at

THESTIGMAPROJECT.ORG

A long-standing commitment to HIV Model, not an actual patient.

At MSD, we are committed to… • Discovering, developing, and delivering breakthrough medicines • Improving access to our antiretroviral medicines for those in need around the world • Participating in public and private collaborations to improve health literacy for patients with HIV • Increasing access to treatment, care, and prevention– particularly in underserved communities www.msd-uk.co.uk

Contributing to HIV care for over 20 years

08-14 INFC-1049535-0000

Date of preparation: August 2012