Care:
Cuts to benefits
Care:
Social or antisocial?
Care:
For dogs
Summer 2012: Issue 13
www.baseline-hiv.co.uk
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
An AIDS Free world is still an age away There was talk, and plenty of it, at the recent AIDS Conference in Washington DC about the end of AIDS. Many leading figures- researchers, medics, community leaders buy it. Judging by the rapturous applause from the audience, most of the 24,000 gathered in DC did. But many don’t. Dr. Richard Horton, Editor of The Lancet, sees it as a “marketing strategy,” and one that, in his opinion “could backfire.” Others regard it as rhetoric, useful perhaps to stem the tide of international donors jumping ship from their commitments. Sure there are some 8 million people on ARVs in low- and middle-income countries but there are more than 3 times that amount waiting in the wings. The US has its own issues; only 28% of the 1.1 million people living with HIV have an undetectable viral load and HIV prevalence among young black people in parts of Washington DC are higher than in sub-Saharan Africa. A separate gathering of sex workers, one of a number of global conference hubs, took place in Kolkatta, India, in part because sex workers (and drug users) with HIV are still denied entry to the US, despite the lifting of the travel ban for positive people some years ago. Pretty shameful, don’t you think? BASELINE was proud to be a media partner at AIDS 2012 and do our bit to get #HIV trending on Twitter. Follow us @BASELINETWEET BASELINE would like to thanks Abbott Laboratories, Gilead Sciences Limited, BMS and Togorun for assistance with our attendance at AIDS 2012. We’d like to send a big thanks to The MAD Trust who supported the development of our new iphone app. 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
Summer 2012
Editorial Administrator: Tom Matthews Development Manager & Photographer: David Rowlands david@baseline-hiv.co.uk Proof reader: Michael Duggan Designer: Gareth Williams Intern: Daniel Jon
In this issue 04 bylines 06 letters 08 headline: UK news 13 headline: global news 16 benefits 20 BHIVA travelling scholars 24 activism (part two) 28 headline: treatment news 31 myline: Joel Korn 32 one stop STI shop - Birmingham 34 hotline 38 myline: Edo Zollo 41 BASELINE congratulates 42 myline: Joseph Healy 44 i-base q and a 47 myline: Mark Taylor 48 AIDS 2012 on twitter 49 NLTSG weekends for newly diagnosed 50 HIV life assurance is here to stay 52 BASELINE barge weekend 54 petcare: dogs 56 why social care is important 60 headline: hepatitis news 62 myline: Roberto Messuti 64 lifeline 66 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.
www.baseline-hiv.co.uk
Deadlines for the next issue Copy 05/11/2012 Advertising 09/11/2012
Robert Fieldhouse has been working and volunteering in the HIV sector since 1997.
Jonathan Grimshaw co-founded Body Positive in 1985 and was at the forefront of HIV activism during the first two decades of the epidemic. 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.
Eleanor Parkes is a disabled student living in the West Midlands who will be applying to Veterinary School in September 2012. She works at her local vets part-time and would be happy to answer any of your questions about animal care!
Chris O’Connor covers issues from the wine
Robert James Ph.D has also been involved in HIV work for many years and has just completed a Ph.D on HIV activism in England. They are planning to co-author a book on HIV activism and would like to contatct people involved in the past. Joel Korn is a member of the Support and Development Worker Team at River House Trust. He is a trained counsellor (MBACP individual and group work) and is also a facilitator of Living Well’s Positive Self-Management Programme. Daniel Jon is studying to be a translator/ intepreter and is helping BASELINE translate the magazine into Romanian.
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 and Secretary of the National Long Term Survivors Group.
trade to the trade in counterfeit medicine. Busily attending medical conferences and scouting for the latest stories.
Edo Zollo is a 38 year old photographer from
David Rowlands has extensive copy writing,
London, UK. He focuses on street life, with London streets and events his main subject.
photography, design and brand development experience across a range of sectors.
Dr. Joseph Healy is a Disability Activist.
Michael Duggan Ph.D has extensive experience
Ecosocialist, founding member of Green Left. Chair of the London Ambulance Service Patients Forum.
in manufacturing, training, and production. Schooled in Chemistry, his interests include developments in HIV medication and the long search for the cure.
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. Summer 2012
Mark Taylor is the Executive Director of The Taylor Partnership, a firm specialising in giving legal advice on all matters of immigration and asylum. He delivers seminars on the subject across the UK and tries to make a potentially dull subject interesting. [We’ve heard him speak, and he does exactly that].
Laura Dunkeyson is the Policy and Parliamentary Officer at NAT www.baseline-hiv.co.uk
Ageing with HIV A community forum for patients, doctors, nurses and all those interested in the subject JUSTRI invites you to a meeting to discuss ageing and HIV and to launch our guide on the subject ‘Coming of Age’ which you can download now at www.justri.org Come and share your views, questions and suggestions as to how we can improve it and better address the information needs of individuals living and ageing with HIV.
Coming of Age
Free printed booklets of ‘Coming of Age’ will be available at the meeting. Dr Mike Youle will be speaking at and chairing the meeting.
a guide to ageing well with HIV
Venue ABplus 29/30 Lower Essex Street, Birmingham B5 6SN
Date
updated 2011
www.justri.org
Thursday 20th September 2012
Time from 7pm – 9pm No registration required but please e-mail louise@justri.org to confirm attendance
brought to you by:
Brought to you by JUSTRI see justri.org for our other projects sponsored by:
www.justri.org
in collaboration with:
Email your letter to: editor@baseline-hiv.co.uk Dear BASELINE Each year the staff and clients of TVPS take part in the Walk for Life, this is a highlight in our social calendar, not only a good opportunity to raise funds but also to dress up, have fun and raise awareness. It’s the only national HIV event that we know of and is therefore very important to us. Many of our clients like to attend the event with us, some access the hardship grant that the walk raises funds for and they feel it is their way of giving something back. However this year we can’t take part – why? Because every person taking part in Walk for Life has to pay a £15 entry fee regardless of their means, in past years those on benefits or not working didn’t pay an entry fee making this event accessible to all. We don’t have enough money in our budget to cover everyone’s entry fee so we’ve decided we can’t take part. All of us feel very disappointed – in these times of doom and gloom this event was one to look forward to, a day to enjoy good company and forget all the issues we face – sadly it’s now been put out of our reach. Best wishes, Sarah Macadam Director, Thames Valley Positive Support THT’s response Genevieve Edwards, Director of Fundraising at Terrence Higgins Trust, told BASELINE: “Walk for Life is a fantastic event, and an opportunity for the whole community to show their support for people living with HIV, but it does cost money to put it on. Like other charity sponsored walks, we ask each walker to contribute a £15 registration fee towards the cost of the event, which helps cover things like staging, licensing, promotion, and the Walk for Life website. “Walk for Life raises money for the Hardship Fund, for people with HIV in severe financial need. Of course we want as many people as possible to join us on the day, but we also need to make sure that as much of the money raised through sponsorship as possible goes to the Hardship Fund, rather than on the costs of putting the event on. This year we had some wonderful corporate supporters who contributed towards the cost of the event, but the registration fees were necessary to cover the rest of the costs. We are hugely grateful to the hundreds of people who registered for this year’s event, which was a great success and raised over £85,000. “When organisations contacted us with concerns about covering the fee, we worked with them to ensure they could still take part by subtracting their entry fee from any sponsorship they raised. After receiving this letter in May, we made Thames Valley Positive Support aware of this option, but did not receive a response.” Summer 2012
Hi David Thanks so much for making a short film to promote awareness about the Partner Study. Apart from it being difficult to watch myself, you have done such a great job with the video (you are really talented!) and thanks for using soft focus for me. Seriously though, this is just brilliant for the Partner Study, thanks again and lovely to see you both at the JUSTRI hepatitis coinfection meeting in Budapest, Best Wishes, Dr. Alison Rodger For more information about the partner study see www.partnerstudy.eu
Thanks to both David and Robert for organising a fantastic weekend on the barge in partnership with National Long Term Survivors Group (NLTSG). The atmosphere that you create is fantastic, which lead to the whole group (most of whom did not know each other before the trip) bonding immediately and deeply. I heard a number of people who attended say that the weekend was just what they needed – a real uplifting experience. I look forward to our continued partnership and keep up the good work! Andy Hilton, Chair, NLTSG www.nltsg.org.uk
www.baseline-hiv.co.uk
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Chris O’Connor
THT wins HIV Prevention Contract
Terrence Higgins Trust has been awarded the contract for the National Programme of Targeted HIV Prevention in England. They will receive £6.7m over the next three years to help reduce the rates of HIV which have persistently increased across the UK. THT will partly use the fund for its contracts with the CHAPS partnership of community agencies. Additionally, The Family Planning Association (FPA) will be funded to the tune of £1.13m towards its specialist sexual health information services for the public and health workers over the same period and with THT will ‘help drive down HIV rates infections and improve people’s sexual health’, according to the public health minister Anne Milton. The main thrust will be to prevent HIV in men who have sex with men and people from African communities, the groups most affected by HIV in England. Earlier this year the TRUST Partnership was formed to bid for the same Department of Health contract. TRUST is a collaboration of support agencies in the HIV sector to develop a new strategy for HIV prevention in England. TRUST is led by METRO, African Health Policy Network (AHPN), PACE, Birmingham LGBT, Sheffield Centre for HIV, and Leicestershire AIDS Support Service (LASS). They are joined, they say, by a range of clinical, commercial, academic and policy experts. A spokesperson for Metro, Patricia Durr, told BASELINE, ‘obviously we are very disappointed TRUST didn’t win the contract, but we look forward to continuing our prevention work with THT and through the CHAPS network. We do feel it’s the sensible move to coordinate the two main strands of prevention strategy gay men and African under the one organisation.’ Milton said: “Sexually transmitted infections can lead to serious health problems. One in 20 gay men and one in 20 black African men and women in England are HIV positive and in London this rises to one in every seven gay men. This money will help the Terrence Higgins Trust and FPA reach out to these communities. They [Terrence Higgins Trust and FPA] will use a range of approaches including social media to encourage more people to come forward for testing.” The TRUST Partnership told BASELINE they will continue to look at other opportunities to develop. 08
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Positive East shows House of Lords Independent Living with HIV
Politicians, public health representatives, charities and corporate supporters recently met with people living with HIV who have been helped by Positive East at the House of Lords to celebrate the achievements of the east London charity. Lord Collins of Highbury, Shadow Works and Pensions spokesman, as well as, former General Secretary of the Labour Party, shared his personal commitment “to improve quality of life and fight against stigma and ignorance” of those who are diagnosed with HIV, after he himself had been forced “to deal with grief and loss”. During the evening one woman told of her experience after being diagnosed with HIV. Struggling with a financial burden and looking after her children, Positive East was crucial in helping her deal with the emotional stress caused by her diagnosis. She spoke of how now she is even capable of volunteering to support others too. “When I first came to Positive East I couldn’t even fill in the forms to receive my benefits. Now, I’m helping other people to live well with HIV too,” she said. Positive East’s advice services team helped her access housing benefit, employment/health support allowance, and helped put her at ease about her immigration status. Summer 2012
Chris O’Connor
THT Direct defunded
THT Direct, Terrence Higgins Trust’s telephone helpline, is facing a funding shortfall, which could see its hours reduced and/or a reduction in the number of paid staff. The Department of Health funding for specialist helplines will go in October. THT had bid, in partnership with Brook and the Family Planning Association, for a service that would cover a whole range of public health issues, but was not awarded the contract. THT say that although no external funding for the service could mean closure, the Board and Executive are committed to continuing to provide a helpline from their own charitable resources. THT will have to cap the funding for THT Direct and will have look at ways to reduce costs. One option is to reduce the service’s operating hours; no longer providing an evening or weekend service – cutting the overall weekly hours from 72 hours to 40. THT Direct lines are currently open for support and advice between 10:00am to 10:00pm Monday to Friday and from 12:00 noon to 6:00pm weekends. Another proposal could be reducing the number of paid staff to one service manager and two assisted information officers – THT acknowledge this would mean fewer calls answered at peak times. According to THT more than 22,000 people will call THT Direct this year. The service is 86% volunteer led. It costs £1258 per day to keep the service running. THT advisers provide emotional support around sexual health or have concerns about living with HIV. They also help people access local services across the UK, whether provided by THT or by someone else. THT Direct covers HIV testing and accessing PEP, benefits advice, discrimination, immigration and criminalisation of HIV. The number is 0808 802 1221. 10
Help us today and become a Beacon hero! How You Can Help
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Just visit www.sussexbeacon.org.uk and click on the Make a Donation button. Please help us NOW to protect our future. Thank you.
the sussex
beacon
20
years of HIV care
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 Chain’s services - healthy living advice from waverley Care, edinburgh
- Come (hiV) dine with me
8 sh o 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: UK Gay Men Porn Survey
River House Art Exhibition
River House is celebrating its 23rd birthday by hosting an art exhibition and reception on 14th September. River House is proud of their longstanding place at the heart of the HIV community in London and is frequently impressed by the creative talent they come into contact with. In celebration of their 23rd birthday, they have decided to host an art exhibition at River House in Hammersmith. The theme of the exhibition is Life. One River House client told BASELINE, “six years ago after spending six months at Chelsea and Westminster hospital I was referred by the medical team to River House. On arrival they referred me to see the clinical nurse specialist, Citizens Advice Bureau and it was through them that I found Positively Women and Zimbabwe Women Support Services. The reason why I look as healthy as I do today is because of the quality and nutritious lunches provided at River House. “What I like about the services at River House is the sense of community as you walk through the doors is the location being by the park, having our own garden and the scenic views of the river. The support I’ve gained from the friendly staff team, the peer support on offer and friends I’ve made.” “If someone was walking through River House’s doors for the first time, I would say to them that River House provides a safe landing, a haven from the world outside, you can take as much from the services offered as you need, but it’s useful to know that they are there.” If you are interested in hearing more about the services at River House contact them on 020 8753 5190 or email: info@riverhouseuk.org Author, Joel Korn: Image, Chris Gunton www.phasedbylight.com 12
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Over 1,000 gay men responded to a GMFA survey through their FS magazine to find out how porn really figures in gay men’s lives. An overwhelming majority (98%) of respondents watched porn, with almost one in four watching it daily (24%) and just over three-quarters viewing porn more than once a week. In recent years there has been a lot of discussion around whether bareback porn encourages gay men to have unprotected sex. The survey results demonstrate that the answer may not be straightforward. Although almost 96% of those surveyed had watched at least some bareback porn, fewer than 7% felt that it had led to them personally having unprotected sex. However a majority of men (53%) believed that watching bareback porn can lead to others having unprotected sex. Matthew Hodson of GMFA, comments: “It’s impossible to say precisely how much impact watching porn has on people’s behaviour but it seems that many people, gay or straight, learn about sex from porn, and perhaps this is even more true for gay men, as we are less likely to get a gay sex education at school.” The survey can be viewed at www.fsmag.org.uk David Bridle, managing director of BOYZ magazine said in written evidence to the House of Lords Select Committee on HIV that there were 180 DVDs available in the UK with R18 certification with ‘bareback’ or ‘raw in the title. He said that UK prevention agencies had avoided the issue of bareback porn, whilst in the US the community group, AIDS Healthcare Foundation were currently taking legal action against porn film producers for not requiring actors to wear condoms.
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Summer 2012
Chris O’Connor
news: global Switch to generics could save a fortune
The consequences of moving to a semi ‘generic’ frontline treatment compared to the existing branded Atripla combination was presented at the recent Washington Conference (AIDS 2012), sparking a debate for many people living with HIV and those involved in providing care. Rochelle Walensky of Massachusetts General Hospital, projected that a switch to generic drugs from the current three-in-one combo tablet Atripla (tenofovir/emtricitabine/efavirenz) would save the US $920 million in the first year alone. However she said that the semi generic three pill combination would be less effective than Atripla’s one dose combination with modelling showing a 78% viral suppression at 24 weeks of taking the generic medication – against 85% for the branded combination: a consequence of the increased pill burden leading to more skipped doses. ‘Are we as a society ready to forego small individual survival benefits for large national savings’, asked Walensky, ‘and are we prepared for the fact that there is no guarantee that the money saved will be reinvested in HIV care.’ Similar cost
saving would be expected in markets such as the UK – followed by the same debate. According to Walensky’s model the ‘small’ survival benefit of staying with Atripla rather than switching to the three-pill regimen would add 4.4 months to a patient’s life, but $42,500 to their bill. Atripla combines emtricitabine/efavirenz and tenofovir in one pill. Emtricitabine is similar to lamivudine (3TC), which recently came off patent. Efavirenz is set to lose its patent in 2013. For the purposes of the exercise branded tenofovir was included in the generic combination, and would still be expected to cost 40% less than branded drug Atripla. Industry watchers say a widespread switch to generic ARVs is unlikely, noting that newer patented drugs are on the way, including Gilead’s Quad slated for approval by the US FDA on 27 August. This 4-in-1 pill contains a novel integrase inhibitor, and outperformed Gilead’s own Atripla in clinical trials they claim. For abstract, webcast and slides see: AIDS 2012 late breaker abstract FRLBX06 http://pag.aids2012.org/Session.aspx?s=13#6
Time’s up - Patents on several key HIV drugs are set to expire over the next five years Drug Type 3TC (lamivudine) Nucleoside reverse transcriptase inhibitor Abacavir Nucleoside reverse transcriptase inhibitor Efavirenz* Non-nucleoside reverse transcriptase inhibitor Delavirdine Non-nucleoside reverse transcriptase inhibitor Darunavir Protease inhibitor FTC (emtricitabine)*Nucleoside reverse transcriptase inhibitor Tipranavir Protease inhibitor Ritonavir Protease inhibitor Tenofovir* Nucleotide reverse transcriptase inhibitor
Manufacturer GlaxoSmithKline GlaxoSmithKline Bristol-Myers Squibb Pfizer Tibotec Gilead Boehringer Ingelheim Abbott Gilead
Expiry 2010 2012 2013 2013 2015 2015 2015 2016 2017
*Component of Atripla: Source: Nature magazine, August 2012
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Summer 2012
Established in 1992, so this is our 20th Anniversary Our special anniversary weekend is 28/29th September 2012 (open to new and existing members)
Living Proof
Our Next weekends... 28-30 September 2012 14-16 December 2012 22-24 March 2013 5-7 July 2013 27-29 September 2013 13-15 December 2013 In November 2012 we will be running our first weekend for people newly diagnosed with HIV. For further details please contact us using the details below
Contact Post: BM LTSG, London WC1N 3XX Email: mail@nltsg.org.uk Tel: 07967 430797 Or visit our website www.nltsg.org.uk for further information and maybe make a donation? Patron: The Right Honourable The Lord Smith of Finsbury, Chris Smith
for people with a diagnosis of HIV for 5 years or more
Funding towards the weekends may be available, see www.nltsg.org.uk/paying.htm or contact us using the details below www.baseline-hiv.co.uk 31 55
Benefit Changes Challenge
Fundamental changes to the UK benefits system continue to present challenges for people incapacitated by HIV. However specialist advisers maintain that sound support and advice is available to help people cope. Their message is don’t panic, be proactive, it’s essential to get good advice. In a nutshell, the Work Capability Assessment will assess existing claimants of incapacity benefit and/or income support for Employment and Support Allowance (ESA) as to their limited capability for work. People will initially be assessed by the ESA50 form as to whether they qualify for the ESA Support component of the ESA or the Work Related Activity Group (WRAG) component. Where there is evidence that the person is entitled to the Support element, a decision could be made without any further assessment although it is more likely that people will be asked to go to a medical interview. For details on the process see www.disabilityrightsuk.org and for further information on the work capability assessment see the Directgov website at www.direct.gov.uk After being diagnosed with what was a terminal illness, with benefits often awarded for ‘life’ the reaction to being reassessed can be profound. Shaun Watson, a HIV Clinical Nurse Specialist (CNS) for Westminster PCT, says some of his clients have become stressed and desperate. He says one client had stopped taking ARVs for six weeks, stopped answering his phone, ‘he said, “I’m just going to make myself ill.” It would have been to no avail, the DWP would have asked why 16
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are you stopping your drugs now.’ As it turned out he had evidence to back up his claim and was put in the ESA Support Group. ‘If you have genuine health issues, get evidence, support and advice,’ says Shaun.
‘I thought when that DWP letter hits the carpet, I’m screwed.’ That support can begin before any Work Capability Assessment starts, says Andrea Muller, Citizens Advice Bureau HIV outreach worker from Hammersmith and Fulham office. ‘It is essential that your HIV specialist doctor is aware of all your health issues because they will need to provide a supporting letter.’ Ola Opoosun, Head of Hardship at THT and a welfare rights adviser, agrees, ‘even if someone is anxious prior to review they can call THT Direct, and when they receive the ESA50 form get experienced support from local advice services such as CAB or THT and get a face-to-face advice session for help with completing the form.’ Positive Perspective The responses of people living with HIV to the benefits changes can differ widely. Mark,
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diagnosed more than 20 years ago says, ‘I thought when that DWP letter hits the carpet, I’m screwed. I’ve had enough of looking over my shoulder, My health’s not that great though, so I want to control what work or education I go into … it would be great though to have some breathing space.’ He says he now has an appointment with a CAB adviser. Gavin Crymble, in his fifties and living long term with HIV is taking a more assertive approach. ‘I’m in the middle of the process, I have my ESA 50 and my goal is to get the ESA Support Group designation. In my opinion I have no realistic hope of going back to work, I have peripheral neuropathy, chronic fatigue - a lot of issues. My doctor is aware of this and has written, I hope, a very supportive letter.’ Gavin has used a number of resources to make his case including his doctor, his CNS, Camden CAB and sites offering specialist information. ‘The www.benefitsandwork.co.uk website helped me enormously. It is run by an advice worker turned barrister, benefits writer and trainer. It includes a lot of information obtained from DWP under the Freedom of Information Act, which they try to make transparent.’ (Please note there is an annual subscription fee for this website.) www.baseline-hiv.co.uk
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Gavin is also starting an independent forum, which has a London-wide membership for people ageing with HIV. www.pafhiv.org.uk. ‘One definition of old age is a fragile social network, people are left alone after suffering bereavement – that’s many of us – and it happened before our time. I need to seek out other people who have undergone this experience that others can’t really understand.’
‘Everyone who is HIV positive is within their rights to go to their clinic and ask for letters of support - if you feel your doctor is a bit funny over this – ask your nurse, if they don’t co-operate; complain, it’s your entitlement to get support.’ Local HIV support services across the UK can also be accessed. For example, River House Trust in west London is having an ESA workshop on September 18 with Camden CAB. This is for Hammersmith residents. The Positive Ageing Forum are having a similar workshop at the Lighthouse West London. Tina Prashar, Manager of ABplus in Birmingham says, ‘We have referral
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pathways into THT in Birmingham for welfare advice and two local agencies – Freshwinds and Red Cross - provide advice surgeries from our offices on Mondays and Fridays. It is really important that people get advice about welfare benefits as things are changing all the time.’ Contact your own local HIV services to find out about support they can offer. Advice…Advice…Advice When the ESA reassessment letter is received, says Andrea from CAB, the important thing is not to panic, get an appointment with your clinic and with a benefits advisor. ‘You have four weeks to return the ESA50 form and you need to get help filling it in and to get a supporting letter from your doctor, this can accompany the form or can follow. Don’t sit on it; if the form is late your benefit can be suspended.’ For a copy of the ESA50 form – see NAWRA, Fit For Purpose: a guide to filling in the ESA50) at www.nawra.org.uk Andrea explains that the new test is on the basis of your functional abilities, there are no automatic exemptions any more. ‘It no longer matters what the condition is’. It is really important your doctor knows all of your health issues; these could be depression, neuropathy or fatigue. Get evidence of all previous referrals. Look at what the form asks for – walking, standing, incontinence, muscle pain, joint pain. Some of the HIV positive people I see have kept a lot to themselves, they either assume their doctors know what it is like 18
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living with HIV, or they might not like to discuss things like depression or diarrhoea.’ If a HIV specialist doctor only looks at CD4 count and viral load levels, then many people are ‘stable’ on their medication. However many older people living long term HIV, are frail and lacking in confidence at the very least. ‘I’m in my fifties’, says Gavin, but if you drop me off at a museum or gallery, with a mixed age group, I would be in the 60 and 70 year old group, that’s the speed I go at. That has to come across; sometimes doctors can be blasé about fatigue.’
‘If a claimant disagrees with a decision – appeal, request a challenge to their decision and ask for written reasons for that decision.’ As with fatigue, mental welfare issues can be underplayed. Andrea comments, ‘Often with mental heath there is no final diagnosis – consider your mental ability, awareness of risk, everyday tasks like cooking, washing, motivation to start and complete task.’ Bear in mind the long-term nature of your condition. You have to be specific. With a fluctuating condition such as chronic fatigue there no point just putting ‘fluctuating’ down on the form you have to say how many good days how many bad days over a week and/or a month. ‘People should think outside of their HIV box’, says Shaun, ‘What other issues do they have?
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What about drug and alcohol dependence or use? All of these issues need to be backed up by a health professional or a counsellor.’ Shaun stresses that doctors and health professionals are legally obliged to stick to the facts and back statements up with evidence.’ However a patient’s relationship with their doctor should be a two-way street. ‘Everyone who is HIV positive is within their rights to go to their clinic and ask for letters of support – if you feel your doctor is a bit funny over this – ask your nurse, if they don’t co-operate; complain, it’s your entitlement to get support’ says Shaun. If a claimant disagrees with a decision – appeal, says Ola, ‘request a challenge to their decision and ask for written reasons for that decision, this could take several weeks while you decide on your next move.’ Andrea adds, ‘although not everyone can get into the ESA Support Group, if they are not happy with the decision - get advice straight away, if you believe you’ve been assessed to the wrong group don’t just wait and see what happens.’ What’s next? The reality, say advisers, is that the UK Government is determined to get more people off sick and disabled benefits and into paid employment. Fairness, say welfare rights workers, is a poor relation to this main goal. In addition the goal posts have often been moved. The National Aids Trust (NAT) has fought a hard fight for benefits rights, and has pushed for the acknowledgement of HIV as a fluctuating condition. However a recent www.baseline-hiv.co.uk
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DWP proposal could mean some people who are asking for their benefit decision to be reconsidered may see their benefits suspended; an “extremely unfair” development, says NAT. Ola from THT says, what is important is for people to stay informed, ‘there is so much going on with the benefit system - DLA changing to PIP from 2013 – these changes affect everyone on benefits, there are legal challenges to some of the decisions – but no one knows how it’s all going to pan out.’ Shaun added, ‘this is an opportunity to see where your life is at. If you’re able, you might want to make the jump into volunteering, education or even some work. Although these are not options for some, we all can choose to live.’ Despite the challenges Mark says, ‘I didn’t think I would survive when I was first diagnosed, there was no treatment - I got through that, and have coped with health problems as they have come along. I’m not planning on going anywhere soon, who knows what the future will hold? Maybe there will be a change of government, who knows. I’ve seen worse off than this.’ For further info see: Disability Rights Handbook – factsheets – ESA www.radar-shop.org.uk Citizens Advice Bureau: www.adviceguide.org.uk Child Poverty Action Group: www.cpag.org.uk TCell HIV Benefits: http://benefits.tcell.org.uk NAT: www.nat.org.uk ++
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HIV scholarship programme brings African docs to UK Dr. Annie Chauma from Lilongwe, Malawi and Dr. Gibril Ndow from Dakar, Senegal recently spent three weeks at the Chelsea and Westminster Hospital observing clinical practice in the UK. The BHIVA Travelling Scholars programme, sponsored by Abbott, is now in its 9th year. Robert Fieldhouse caught up with the medics at this year’s British HIV Association conference in Birmingham. Please tell us about the setting you work in Dr. Gibril Ndow: I currently work at the Department of Infectious Diseases at one of the teaching hospitals of the European University of Dakar, a specialist unit with over 20 resident trainees from 14 countries in Africa. We are the main reference centre for Senegal. We have an inpatient hospital, an outpatient unit and most recently a regional research training centre solely dedicated to HIV research. Some phase III clinical trials have been carried out there. Between these we cater for a cohort of more than 4,500 patients. We have no more than 35 doctors. Dr. Annie Chauma: I work at Lilongwe district health office at Bwalia hospital. In Malawi we have several districts so our district hospitals are referral centres for the various peripheral health centres. We have a maternity unit, 2 rural community hospitals and 32 government health centres. At the hospital, which admits only maternity cases, there is a centre for antiretroviral therapy. This is where all the adult HIV cases are managed. The population of Malawi is 2.1 million and our HIV prevalence rate is about 8%. Lilongwe is an urban centre but we also have the rural facilities. At the urban hospital I’d say we have close to 20,000 people on treatment. 20
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What is a typical first-line HIV treatment today? Dr. Annie Chauma: We have new guidelines now. We are trying to phase out d4T (stavudine) from the first-line. We started with pregnant women and people who are on TB treatment. We have tenofovir, 3TC and efavirenz. Dr. Gibril Ndow: We stopped using d4T over 2 years ago. First-line therapy is based around either AZT or tenofovir with 3TC and nevirapine. What is your current most pressing need? Dr. Gibril Ndow: Human resources and clinical facilities. With respect to diagnostics it is very limited; access to resistance testing is almost non-existent. We do viral load for our patients only after they have been on treatment for six months to assess clinical response because it is terribly expensive. CD4 testing is relatively available for almost every patient and it is free of charge, but diagnostics are still very limited; liver function testing and kidney function are not widely available. When they are available they are highly expensive and are not covered by the HIV budget: patients have to pay for them. We have first-line HIV therapy and access to a couple of drugs for second-line therapy but that is where it ends. Second- line treatment is mainly protease inhibitor-based regimens, such as lopinavir/ritonavir. Dr. Annie Chauma: We don’t have enough doctors or nurses for the population we serve. In the centre where I am working we have six doctors to serve the whole district. We have a system of
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clinical officers as well and medical assistants but we still need the doctors. We don’t have easy access to viral load monitoring. We have access to CD4 testing but we don’t have CD4 machines in the peripheral facilities. They have to come to the central hospital. We have issues with transport. We rely on clinical monitoring to make decisions.
‘Whenever someone comes into hospital we counsel them and try to encourage them to have a HIV test to encourage early diagnosis and prevent the complications of late presentation.’ How do you keep in touch with patients? Dr. Annie Chauma; We have other organisations that partner with us to text patients if they do not show up for an appointment. We also try to get a map of where people live- we try calling and then visiting them. Dr Gibril Ndow: We really don’t use mobile phone technology to remind patients about their appointments. Generally we would call people after they have missed appointments. Are health services now task-shifting from doctors to nurses? Dr. Gibril Ndow: Even though we don’t have enough doctors we still have more doctors than other healthcare workers. The shortage is actually more severe when it comes to nurses and social workers. The doctors do most of the work. We only www.baseline-hiv.co.uk
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have 5 counsellors and social workers in the unit. Doctors do the pre- and post-test counselling. Dr. Annie Chauma: We have more nurses than doctors and clinical officers. We have people who are trained across the board to provide antiretroviral therapy. As long as you are trained and certified, you can do that. Most of them are nurses. When people are coming for follow up, they are usually seen by a nurse. If there are any complications they are referred to a doctor. How have antenatal services contributed to improving HIV diagnosis rates? Dr. Annie Chauma: Most of the data we have on HIV prevalence and incidence have been projected from antenatal data. We are actually using the concept of diagnosis in the antenatal setting as a way to get people into care. Women understand we have a health education session in which we discuss HIV, how it is transmitted and what policies there are to try to prevent motherto-child transmission. Then they go through individual counselling. The policy now is that if you are positive you are started on ARVs right away. When we counsel people we explain to them that if they are on treatment there will be a greatly reduced chance they will transmit HIV to the baby, which is what all the women want. What has been the impact of increasing access to treatment? Dr. Gibril Ndow: Initially for us in Senegal, ++
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even with access to ARVs, patients were not willing to come forward Some patients would tell me, ”I don’t come to clinic because I don’t want to be seen coming to your clinic.” But over the past couple of years that has become less of a problem now patients have seen the results of the treatments. If you are on ARVs you can lead a relatively normal life and it is difficult for the community to know that you are HIV positive. What we tend to do is share with patients the results of recent studies about how the treatment benefits you and how it can benefit your partner. What can a setting such as the UK learn about how you provide HIV treatment in Africa? Dr. Annie Chauma: I am not sure what the policy on testing is here in the UK, but I don’t think HIV testing is offered to people who come into hospital automatically. That is one of the things that you could learn from us because we have provider initiated HIV testing. Whenever someone comes into hospital we counsel them and try to encourage them to have a HIV test to encourage early diagnosis and prevent the complications of late presentation. Breastfeeding is not advised in the UK, where we have good access to formula feed. What advice is given in your setting? Dr. Annie Chauma: Women are told to exclusively breast feed for six months, but if a patient can afford formula feed and has access to clean water, we can offer it. Mixed feeding is not recommended as the babies are more likely to get diarrhoeal diseases and studies have shown that is associated with higher mortality. Despite the higher risk for transmission, breastfeeding is still recommended. 22
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How far do you still have to go rolling out treatment programmes? Dr. Gibril Ndow: Access to therapy has increased. In Senegal 60 percent of those who should be on treatment are on treatment but that only reflects what is happening in the urban centres. In the rural setting it is understood that HIV prevalence is very low but access to healthcare is very limited. Most peripheral centres don’t provide antiretrovirals. Dr. Annie Chauma: We just adopted the 350 CD4 cut off for initiating treatment. I think Malawi has done well because we only introduced free antiretroviral therapy through the government hospitals in 2004. We scaled up in 2008 and right now we are trying to phase out d4T-we still have an unmet need of around 90,000 as of 2010 but we are getting there. About the BHIVA Travelling Scholars programme: The Travelling Scholars programme, sponsored by Abbott, provides practicing HIV clinicians from resource-poor-countries with access to cuttingedge research and treatment information to help improve clinical treatment in their home countries. The programme is co-ordinated in collaboration with the British HIV Association (BHIVA) and St Stephen’s AIDS Trust (SSAT) - St Stephen’s AIDS Trust was founded in 1991 to support clinical research in HIV/AIDS to improve the quality of life for people living with HIV/AIDS and to share knowledge and experience through education and training. Based in the Chelsea and Westminster’s HIV/GUM Unit, the Charity’s primary aim is to improve treatment for HIV positive patients through research into new drugs and delivering and ensuring best practice. This article was funded by Abbott with no editorial control or input.
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Download
Magazine directly from
Activism:
“it’s much less confrontational now”
Jonathan Grimshaw and Robert James conclude their look at how HIV activism has changed in the UK. The appearance of effective antiretroviral therapy (ART) against HIV in 1996 brought about a revolution for people with HIV and those who cared for them. An almost universally fatal illness was transformed to one that could be controlled by therapeutic drugs; pretty horrible drugs sometimes but ones that actually worked. Treatment was not the only major change that happened in HIV over the course of the epidemic with a revolution in the laws around HIV and those most affected by it in the UK; gay men. The dominant mode of HIV activism also changed from protest to involvement. We have moved from activism by groups of people who, as one eminent doctor put it, “were quite used to taking on society and saying ‘No! This won’t do’” to activists as knowledgeable negotiators working with doctors, nurses and civil servants to try and improve the lives of people with HIV. In the last article we looked at social issues in HIV over the past 30 years; this one looks at activists’ involvement in treatment issues, the law and why ‘involvement’ is the main tactic for activists now. The idea of involvement in decisions about their treatment and care was a long standing 24
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demand of people with HIV appearing in the ‘UK Declaration of the Rights of People with HIV and AIDS’ in 1989 and internationally recognised in the GIPA (Greater Involvement of People with AIDS) principles. Involvement has also become mainstream government policy: the NHS, local councils and even the Crown Prosecution Service want to consult people, they may not listen but they do at least ask now. In the UK the impact of involvement by activists in treatment has been significant. Although there was some involvement in treatment issues before 1996, treatment activism really took off with ART. In 1989 there had been a couple of ‘patient representatives’ on the AIDS trials group of the Medical Research Council and some HIV organisations produced information about AZT, the only HIV drug available then. After ART, activists began to work with medics but perhaps inevitably, this started with a protest about the first treatment guidelines issued by the British HIV Association (BHIVA). These guidelines were published April 1997 and were bluntly denounced as not involving people with HIV and as scientifically poor, “they do not represent the best medical thinking,” as Raffi
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Rob James & Jonathan Grimshaw
Babakhanian said in Positive Nation. HIV activists in this country had educated themselves on medical aspects of the disease to criticise clinical guidelines on medical grounds meaning any argument against their involvement was about qualifications and not relevant knowledge. Ever since then the BHIVA guidelines writing panel has included community representatives including some of the earlier critics. The influence of activists has not just been on guidelines though, as one nurse pointed out, “we have one pill once a day, because patients have driven that, and I think that’s a huge achievement. There’s lots of activism in cancer but there are still horrendous problems associated with the medicines.” Activists now write the majority of the treatment information for patients: literature from i-Base, the website aidsmap.com and the treatment pieces in this very magazine are written not by medics but by activists. Treatment information was produced by activists before ART, most notably in the National AIDS Manual (NAM) and its companion newsletter AIDS Treatment Update. Originally this manual was a ringbinder intended to provide “a source of calm, authoritative and trustworthy information” www.baseline-hiv.co.uk
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in the midst of the hysteria surrounding HIV at the time. The very first edition actually had very little about treatment and concentrated on issues of sex, sexuality and bereavement. It was only later that NAM became much more treatment focussed and now produces the website aidsmap.com
‘Activism changed, but as others have rediscovered the importance of protest recently, around student fees and the ‘hardest hit’ demonstration we must not forget its value or history in HIV.’ Involvement though has gone beyond working with doctors to produce treatment information. Activists in the UK-CAB decide the topic and speakers for a session at the BHIVA conference - the major conference on HIV medicine in the British Isles. Every year the medics get to listen to a subject that activists think is important. Radical changes have not only happened in the medical field but also in the legal understanding of HIV and the people it affects. When ART become available in 1996 discrimination against gay
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people was not only legal but same sex couples were described in one piece of legislation as having a “pretended family relationship” and the “promotion” of homosexuality by local authorities was banned, making it almost impossible for homosexuality to be discussed in schools. Discrimination against disabled people had first been made illegal the previous year and even this only covered people who were so substantially disabled that they could not carry out normal activities over for some time, meaning many people with HIV were unable to use it. The changes since then have been dramatic: the insulting laws about gay people repealed, discrimination on grounds of sexuality made illegal, people with HIV given protection under the Equalities Act from the time of diagnosis and recently HIV added to the list of communicable diseases where NHS treatment is free to all regardless of residency status. It has not all been good news though; at almost exactly the point HIV became treatable sexual transmission became a criminal offence in certain circumstances. Furthermore public health protection laws have been re-drafted to include HIV as a possible reason for quarantine and it is legal to send people on ART back to a country with no treatment available and a slow painful death. Activist involvement has been significant in all these legal areas with input to the consultations on discrimination laws, work with the prosecutors to provide some guidelines on when people will be taken to court for sexual transmission, the changes in public health law and persistent lobbying of the Department of Health about charging migrants for care. There have been successes: the prosecutorial guidelines are much clearer about when 26
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prosecutions should happen, they have been kept up to date to include the impact of treatment on how infectious a person is and continued dialogue with the Department of Health has finally led to the changed charging regulations. One reason why involvement has superseded protest as a way of working for activists is that it can be effective. Veterans of gay rights campaigns during the 1980s knew the value of protest to make people aware of an issue and, although it did not result in changes to the law, when followed up by lobbying and involvement in the system by Stonewall things did change, discrimination laws coming in, civil partnerships and gay bashing defined as a hate crime. We have come a long way in HIV, from a time when the illness was deadly, medics knew best about treatment and homophobia was respectable. Treatment is often easy to take now with few side effects and activists demands for involvement in decisions about their care accepted in many areas. Activism changed to fit into this new world but as others have rediscovered the importance of protest recently, around student fees and the ‘hardest hit’ demonstration we must not forget its value or history in HIV.
References: See www.gnpplus.net for the GIPA principles on involvement. Now called HIV Treatment Update and published quarterly. A network of treatment activists see www.uk-cab.net Local Government Act 1988 Section 28. N v UK [2008] ECHR 26565/05 In England the Crown Prosecution Service and in Scotland the Prosecutor Fiscal Service
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Join NAT’s HIV Activists Network A virtual group of people - passionate about the rights of people living with HIV in the UK.
• Choose from a range of e-campaigns focussing on different issues • Tell us about the issues in your area for targeted local campaigning • In less than 10 minutes each month, you can influence change, stay informed and make a difference Find out more about the network, current campaigns and sign up online at:
www.lifewithHIV.org.uk Baseline 13.08.12.indd 1
13/08/2012 15:20:37
Two More People Eradicate HIV
news: treatment
Elvitegravir matches raltegravir
The investigational once-daily integrase inhibitor elvitegravir continued to perform as well as the twice-daily, licensed integrase inhibitor raltegravir (Isentress) at 96 weeks for people with high levels of drug resistance. Gilead Sciences’ next-generation integrase inhibitor elvitegravir is boosted with ritonavir (Norvir) or Gilead’s investigational booster cobisistat. This permits once-daily dosing. The study included 712 treatment-experienced people in the U.S., Europe, and Australia; around 80% were men, 60% were white, and the average age was 45 years. The average CD4 cell count at the start of the trial was approximately 220 cells/mm3. People combined one of the integrase inhibitors with a ritonavir-boosted protease inhibitor and a third active drug. Efficacy of elvitegravir and raltegravir remained comparable at 96 weeks, with 48% and 45%, respectively, having a HIV viral load below 50 copies/mL. CD4 cell gains were also similar, at approximately 200 cells/mm3 in both arms. Elvitegravir and raltegravir were both welltolerated, with few participants discontinuing due to side-effects (3% vs 4%, respectively). The researchers concluded that at week 96, once-daily elvitegravir in combination with a fully active boosted protease inhibitor and another drug in treatment-experienced patients “continues to be non-inferior to twice-daily raltegravir in efficacy with excellent tolerability.” 28
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Two men who underwent bone marrow transplants for lymphoma using a milder form of chemotherapy that allowed them to remain on antiretroviral therapy (ART) appear to have eradicated HIV. Timothy Brown, perhaps better known as the “Berlin Patient” is the first person known to have been cured of HIV after receiving 2 bone marrow transplants to treat leukemia from a donor with an uncommon genetic mutation, CCR5-delta-32, that causes absence of CCR5 co-receptors, one of the avenues HIV uses to enter cells, and provides protection against acquiring HIV. 5 years post-transplant Brown still does not have detectable replicable virus in his blood, immune cells, gut, or other tested tissues. US researchers described 2 HIV positive men who underwent stem cell transplants to treat lymphoma. One had been HIV positive since birth, the other had acquired HIV through sexual contact. Both had been taking HIV treatment for 3-4 years at the time of transplantation. Both patients carried a single copy of the CCR5-delta-32 mutation (not 2 copies, like Brown’s donor) so their cells were only partially resistant to HIV; the donors did not have naturally resistant cells. One of the men has now been followed for 2 years and the other for 3.5 years, and both have “no traces of virus” in their blood or immune cells. The researchers speculated that replacing all the men’s original immune cells may have purged a reservoir of latent HIV, while sticking with the HIV therapy may have protected the newly introduced cells from infection, a sort of pre-exposure prophylaxis (PrEP). The researchers were particularly careful not to refer to these men as cured. They are still taking HIV therapy, and it is not yet known whether they would experience a viral load rebound if they were to stop treatment. The men have been advised to stay on HIV therapy for the moment. ++
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Robert Fieldhouse
Rilpivirine gets green light in Wales
The All Wales Medicines Strategy Group (AWMSG) has recommended the NNRTI rilpivirine (EDURANT) for prescription on the NHS in Wales for people starting antiretroviral therapy. The AWMSG approval mirrors the recommendation for rilpivirine in the latest version of the BHIVA (British HIV Association) treatment guidelines. Clinical trials for rilpivirine have shown that it offers similar efficacy with fewer reported grade 2-4 adverse events (at least possibly related to treatment) compared to efavirenz. Taken as a 25mg once daily tablet, rilpivirine is now the smallest ARV tablet available. The tablet must be taken at the same time each day, with a meal, in combination with other antiretrovirals. Rilpivirine also forms part of Gilead’s Eviplera, a once daily fixed dose combination of rilpivirine and emtricitabine 200mg/tenofovir 300mg, also licensed in Wales. The latest Health Protection Agency (HPA) statistics show that HIV in Wales is growing at an unprecedented rate, with a 100 per cent increase of new diagnoses from 2002 to 2011 compared to only 12 per cent for the UK as a whole. However, advances in treatment and an emphasis on personalised regimens have meant that HIV-related deaths (including AIDS) have reduced in Wales by almost a third since 2007. The latest statistics show the impact of managing HIV effectively in Wales: the number of people accessing HIV care in Wales has increased by almost 245% (1,321) since 2001 (383) with the majority (1,077) on antiretroviral therapy. The number of HIV diagnoses in Wales is up to 2,034 due to a significant increase in HIV testing since 2004 (65,815). www.baseline-hiv.co.uk
Generic 3TC launched in the UK
Copycat versions of ViiV Healthcare’s 3TC (lamivudine) at 150mg and 300mg launched in the UK and Italy in June. This is the first generic HIV medicine to be made available by Mylan www.mylan.com in Europe. Mylan is one of the world’s leading providers of affordable antiretroviral drugs and is well-established distributing HIV medicines across the developing world. Lamivudine tablets had sales of approximately £2.6 million in the UK for the 12 months ending March 31, 2012.
Once daily maraviroc plus atazanavir looks good
A nucleoside/nucleotide analogue-sparing regimen (avoiding drugs like abacavir or tenofovir) but including the CCR5 antagonist maraviroc (Celsentri) plus the ritonavir-boosted protease inhibitor atazanavir (Reyataz) produced good viral control and was well tolerated over 96 weeks. The trial included 121 people starting HIV therapy, around 90% were men, three quarters were white, and the average CD4 cell count was approximately 350 cells/ mm3. Participants were randomised to receive either 50 mg once-daily maraviroc or coformulated tenofovir/ emtricitabine (Truvada), both with 200 mg atazanavir boosted with 100 mg ritonavir. At 96 weeks, 67.8% of people receiving maraviroc and 82.0% of those receiving tenofovir/emtricitabine had a viral load below 50 copies/mL). Three people taking maraviroc and two people taking tenofovir/emtricitabine experienced treatment failure. Average CD4 cell increases were similar in the two groups, at 264 vs 240 cells/mm3, respectively. People taking maraviroc showed a larger reduction in immune activation on CD4 cells at 48 weeks, consistent with earlier research suggesting maraviroc might reduce inflammation, but the clinical significance of this is unknown.
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@PositivelyUK
Championing the rights of people living with HIV
positivelyuk.org Free downloads: - The Pregnancy Journey with HIV - Making the most of your GP - Positively UK Magazine KPS Enabling Futures Project KPS Trebullom is a Respite and Retreat B&B for people affected by HIV set in the Cornish countryside. Our recent award from the Big Lottery Fund enables us to offer fully funded:
info@positivelyuk.org 020 7713 0444
www.positivelyuk.org
Adult Personal Development Breaks 3 nights/4 days full board accommodation. For clients who are thinking about returning to work, retraining or volunteering, and would benefit from attending workshops to help HIV positive clients move forward, available all year round. Workshops on: Changes to the benefits system - what to expect Disclosing status - how best to do it The Equality Act 2010 and understanding your rights Moving towards voluntary work or employment FREE HIV Awareness Training One day training events open to anyone wanting to increase their knowledge and understanding of HIV: what it is, how it’s transmitted and how it affects people living with it. Help us reduce stigma and discrimination.
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 on this new and exciting project, contact us on
For more information, including a list of participating clinics across Europe see www.partnerstudy.eu or contact Dr Alison Rodger at
T: 01566 86378 E: sjarvis@kpsdirect.com www.kpsdirect.com
simon.collins@i-base.org.uk
alison.rodger@ucl.ac.uk
or Simon Collins at
Joel Korn
Papa Can you Hear Me? What do you do when you are awoken by a dream night after night of yourself holding a baby lovingly in your arms? Picturing the child at every important stage of its life and feeling a sense of pride at sharing important moments? I have realised that having fun with my niece and nephews, whom I love very much is no longer enough; that one day in the near future I would like to have a child of my own. Being a single gay man and living with HIV, my options are more limited than if I were a single heterosexual female. If I wanted to have a child of my own, I may need to have my sperm washed, which is a costly process. I would also need to find a woman willing to be a surrogate mother. Then again, how about fostering or adoption?
‘I did not understand how the child would know it was gay; in my mind I imagined a child coming out of the womb with a whistle and disco ball.’ Telling friends and family that I want to adopt one day, has triggered mixed responses. Some see it as a selfish act, since I live with HIV and perhaps one day in the future may become unwell. I guess no parent can assure their child that they will always have good health? A gay lover questioned what I would have to give up to be a dad. As I get older, going out seems less important to me. There are, fortunately, many other ways to be a gay man and there is a life beyond the party scene. Also, I have loving friends and family around me, whom I know would support me if I were to be successful in adopting. When I spoke to my local authority about the possibility of adoption, despite saying I wanted www.baseline-hiv.co.uk
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a child aged between 6 weeks to 4 years old; the social worker asked me if I wanted a gay child? I responded that as most children are born asexual, I did not understand how the child would know it was gay; in my mind I imagined a child coming out of the womb with a whistle and disco ball. The social worker went on to question what my HIV Consultant would say about my life expectancy. I asked if they asked everyone the same question. The next day I spoke to the manager, who initially laughed at their colleagues’ line of questioning. But then went on to explain that perhaps it would be easier for me to have a HIV positive child, as fewer people are coming forward to adopt them. I obviously would not mind, but I wondered if I was being stigmatized that a child with the same condition would be more appropriate for me? Sure there will be lots of work that will need to begin to integrate any child into my wider family. I would want my child to feel comfortable enough to be open about their gay dad and to ensure my support systems are set up. I’m moving to a new chapter in my life by returning to my roots in north London. I’m ready for the long journey and not going into the process blind by telling myself to expect the unexpected and whatever the outcome not to be disappointed. Wish me luck. ++
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Robert Fieldhouse
Point-of-care HIV testing A case study: The New Attitudes Clinic, Erdington The New Attitudes walk-in contraception and sexual health clinic in Erdington, Birmingham is one of the first to offer patient services from ‘behind a shop window’. The Erdington Health and Well-being Centre, which also includes a ‘walk-in’ GP-led service and health and well-being support, is situated on the busy High Street, making it easily accessible to all local residents. By integrating New Attitudes’ services into the health centre, the sexual health team aims to encourage people to access sexually transmitted infection testing and treatment without worrying about being seen entering a sexual health clinic; with so many services on-site, no-one knows the reason for the client’s visit.
‘The clinic offers a comprehensive service including rapid HIV testing using the Alere HIV 1/2 Combo test.’ Erdington, which is one of three New Attitudes clinics provided by the Heart of England NHS Foundation Trust, was established after asking both the public and professionals what they wanted from of a sexual health clinic and which issues mattered most to them. Over 5,000 respondents supported the need for a local, easily accessible integrated sexual health and contraceptive service. The clinic has now been open for nearly two years and offers a comprehensive service including rapid HIV testing using the Alere HIV 1/2 Combo test, which provides ‘on the spot’ results. Jackie Carney, Clinical Nurse Specialist explains the benefits of point-of-care HIV testing at New Attitudes; “Our unique nurse-led contraception and sexual health service is located on the High 32
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Street in a very busy shopping and residential area. We have a multi–national population, many of whom have significant risk factors and rapid HIV testing is proving to be invaluable.” “The clinic operates on a ‘walk in’ basis and offers sexual health and contraceptive services six days per week. The Alere Determine HIV 1/2 Ag/ Ab Combo test enables us to give patients their results within 20 minutes and allows us to offer immediate care or further testing if indicated.” “This can only be seen as beneficial to the overall care of the patient. The relief they express when they are offered testing and results within 20 minutes often outweighs their initial anxiety.” The Alere Determine HIV – 1/2 Ag/Ab Combo is the only 4th generation rapid, point-of-care test with the ability to detect HIV-1 and HIV-2 antibodies and the p24 antigen. This innovative technology enables you to detect HIV infection up to 12 days earlier than older, antibody only tests in just 20 minutes. The ‘Alere Determine HIV Combo’ is currently used in a variety of settings from sexual health clinics and community outreach programmes to the laboratory where it is used as a confirmatory test. For further information on the ‘Alere Determine HIV Combo’ test please contact the Alere Customer Care team on 0161 483 5884 or ukcustomer@alere.com Useful point of care links: HIV in Primary Care (to request a hard copy please contact ukcustomer@alere.com) Guidelines for the treatment of HIV-1 positive adults with antiretroviral therapy 2012, BHIVA. This article was supported by Alere www.alere.co.uk
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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.
Š 2012 Alere. All rights reserved. All trademarks referenced are trademarks of their respective owners. REF020-SH-010/02/12 SC
alere.co.uk
Robert Fieldhouse
Ageing with HIV A community forum for patients, doctors, nurses and all those interested in the subject
Ageing and HIV workshop
JUSTRI invites you to a meeting to discuss ageing and HIV and to launch our guide on the subject ‘Coming of Age’ which you can download now at www.justri.org
share your in If you Come are andquestions living views, and suggestions as to how we the West Midlands and Coming of Age can improve it and better address the information interested inneedsAgeing and of individuals living and ageing with HIV. HIV, ABplus Free is printed offering booklets ofan ‘Coming of Age’ will be available at the meeting. to unmissable opportunity Dr Mike Youle will be take part in a speaking workshop with a guide to ageing well with HIV at and chairing the meeting. Dr. Mike YouleVenue from London’s Royal Free Hospital. The event is free and Date open to Time all. Thursday No registration required September 20th 7-9pm at to you by JUSTRI ABplus, 29/30Brought Lower Essex Street, Birmingham.
New HIV e-learning package
ABplus 29/30 Lower Essex Street, Birmingham B5 6SN
updated 2011
www.justri.org
Thursday 20th September 2012 from 7pm – 9pm
but please e-mail louise@justri.org to confirm attendance
see justri.org for our other projects
brought to you by:
in collaboration with:
www.justri.org
sponsored by:
Join the Partner Study
Check out BASELINE’s interview with the Partner Study’s Dr. Alison Rodger at www.baseline-hiv.co.uk to find out what and who they are looking for in this important study testing the role antiretrovirals play in reducing the chance of onward HIV transmission to sexual partners.
New HIV YouTube Channel
Janssen recently launched a “Janssen in HIV” YouTube Channel as a round-up of its activities to mark the 30 years of HIV and as a reminder of how far we have come in the fight against HIV. This includes a timeline of the 30 years of HIV, interviews with people living with HIV in the UK and a section inviting anyone impacted either personally or professionally by HIV to share their story from the past 30 years. www.youtube.com/jansseninhiv 34
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Herts Aid and Herts Rite have developed a 7 module HIV e-learning package aimed at professionals. The overall aim of the programme is to increase the awareness, knowledge and understanding of HIV and issues associated with it for health and social care professionals. In turn, this will will reduce stigma and discrimination and improve service experience for PLWHIV. The modules include HIV Awareness and Prevention, HIV treatments, Stigma and Discrimination, HIV and Mental Health, HIV and The Law, Drugs Alcohol and HIV and HIV pre-and post-test discussion training. Learning time is approximately 10 hours. The programmes include personal testimony footage from PLWHIV. E-learning is an easy and accessible way to complete training in a flexible, personalised way allowing professionals to fit it into their busy schedules without the need to take time out from the office to attend a training course. The 7 module programme costs £95 per license. Contact www.hertsrite.co.uk or www.hertsaid.co.uk for more information
On benefits? Please complete this survey
In response to the Government’s moves to cut the number of people with disabilities claiming benefit, the Disability Benefits Consortium (DBC), of which NAT is a part, want to know more about people’s experiences of the benefits system. Please complete their survey at: www.surveymonkey.com/s/disability-benefits
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Summer 2012
Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk
Positive East launches 5K Red Run 2012 Following on from the wonderful success of last year’s event, Positive East are delighted to announce the launch of an even bigger and better 5K Red Run for 2012. Sunday 25th November will see community HIV charity Positive East bring back the 5K Red Run for a third year. The 5K Red Run, which will take place this year in east London’s Victoria Park, presents an opportunity to bring people together, make some noise at World AIDS Day, and raise HIV awareness. Last year’s 5K Red Run broke Positive East’s fundraising records, raising over £15,000. Positive East Director Mark Santos said: “after last year’s success, we’re absolutely delighted to launch this year’s event, and to bring the 5K Red Run home to east London. It’s a really fun event which raises significant funds to support people affected by HIV in east London.” www.baseline-hiv.co.uk
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The event, which raises funds specifically for Positive East’s HIV testing service in east London, looks set to be bigger and better than ever before. For the first time runners will have the option of taking on either a 5k or 10k route. The event is still free, and for taking part runners will receive the usual limited edition T-shirt, chip timing, and delicious refreshments. In addition, the event is being supported this year by Positive East supporters MAC Cosmetics. MAC’s Barbara Clocanas stated: “our MAC team are delighted to be teaming up with Positive East at this year’s event. We’ve been working with the charity for a number of years now, and the 5K Red Run is another great way to get involved at World AIDS Day.” Online registration for this year’s 5K Red Run is now open. Just visit www.5kredrun.co.uk for more information. ++
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Need to Build your Self-Esteem?
One day workshops in Perth / Glasgow for gay and bisexual men living with HIV. Living with HIV can affect you in many different ways, often impacting on your selfesteem. If you could do with help feeling fabulous, come along to this one-day workshop and be introduced to some tools for building self-esteem. The course will help you to: Feel better about yourself Be more confident and believe in yourself Stand taller and feel more secure in your beliefs Express your needs and desires more clearly be kind to yourself PERTH: Saturday 15 September 2012 GLASGOW: Saturday 29 September 2012 Workshops will run from 10.30am 5pm. Lunch will be provided and transport costs can be covered. To book your place contact Steve at Gay Men’s Health on 0131 558 9444 or email steve@gmh.org.uk
. .. .
Fancy volunteering at Proms in the Park or Radio 2 live? This summer The Food Chain are looking for volunteers to help serve thirsty punters at London music events. Your wages will be donated to The Food Chain and help them raise the money they need to help make the most of their new kitchen including delivering more meals, more cookery classes and communal eating opportunities. No previous experience is necessary but they want smiley, reliable volunteers! If you would like to volunteer please email ncoll@statestreet.com and let her know if you are free to work either or both days, the working hours are between 6 to 8 hours, in return you will get two drink vouchers at the end of the shift. Dates are Saturday 8 and Sunday 9 September 2012. 36
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HIV Workshops at The Brunswick Centre
HIV 101- The basics, treatments and living with HIV – workshop with BASELINE editor Robert Fieldhouse at The Brunswick Centre, Huddersfield. September 22, 2012 10 am- 4pm. Lunch provided free. HIV and your Body - learn about your liver, heart and bones. Enjoy a free yoga session and lunch. October 20 2012 10am-4pm. For more info contact emma@thebrunswickcentre.org.uk
Want to know about HIV/HCV and TB drugs in the pipeline?
HIV i-Base and Treatment Action Group have just published a new Pipeline Report which shows there are at least 15 promising new HIV drugs in phase II and III development. The report also reveals there are over 25 direct-acting antivirals (DAAs) in development for hepatitis C. (though there are hundreds of different compounds in development). Two new drugs—bedaquiline from Janssen and delamanid from Otsuka have been filed with regulators for accelerated approval to treat drugresistant forms of Tuberculosis. There’s also heaps of info on diagnostics, preventive technologies and vaccines. For the full report see www.PipelineReport.org ++
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Summer 2012
Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk Robert Fieldhouse
Chair of Trustees Recruitment
The Consortium of Lesbian, Gay, Bisexual and Transgender Voluntary and Community Organisations are recruiting a new Chair of Trustees. This volunteer position is a strategic leadership role for the board and the organisation as a whole, bringing experience to move the organisation forward following two years of transition and change. The Consortium are looking for someone with strong leadership skills, who thinks strategically, communicates effectively and can be an excellent ambassador representing the organisation at the highest levels. You do not have to have direct experience in the LGBT voluntary sector but an understanding or appreciation of the unique needs of voluntary or second tier organisations would be an advantage. Someone with experience of fundraising for infrastructure organisations would be ideal. In addition to time commitments attending board meetings and AGM, the Chair also line manages the CEO and holds monthly one-toone meetings. There are also administrative and ad hoc actions taken between meetings such as approving online bank payments and strategic or financial decisions outside the delegated authorisation structure to staff. If you are interested in applying or finding out more about this role contact board@lgbtconsortium.org.uk Applications are requested to be submitted by Friday 7th September to board@lgbtconsortium.org.uk. The Board are also undertaking a general recruitment for Trustees. They are particularly keen to receive applications from trans people and women with the appropriate skills and experience as detailed in the Board Recruitment Pack. www.baseline-hiv.co.uk
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Going to Leicester Pride? Check out Trade’s Health and Wellbeing Marquee September 1st is Leicester Pride. Local HIV prevention and sexual health promotion charity Trade will be on site to offer support and advice on how you can have the safest sex you want, whilst also show casing the excellent services and volunteering opportunities they provide to the local LGB&T community. Leicester GUM will be offering a full sexual health screen at the park on the day and everyone who goes for a test will be entered into a free raffle, with the opportunity to win some great prizes. PureGym will be running fitness classes and health checks throughout the day; looking at blood pressure, body fat, BMI, and also providing nutritional advice and to top it all ARC therapies will be giving out free 15 minute shoulder, head and foot massages.
Climb a Mountain...
Join Large Outdoors and climb a mountain this year, do it for yourself or do it for the charity of your choice. Try Ben Nevis, Yorkshire Three Peaks, Scafell Pike or Snowdon. View events online at www.largeoutdoors.com or contact Gareth: gareth@largeoutdoors.com, Tel: 0161 401 0460
Are you planning anything special on World AIDS Day? Send details to editor@baseline-hiv.co.uk by November 5 to include in our round up of events across the UK. ++
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37
Edo Zollo
Stand Tall, Get Snapped I am Edo Zollo, a photographer happily and successfully based in London for the past 12 years, though I was born and raised in the south of Italy. I followed in my father’s footsteps as a professional photographer and I have childhood memories of assisting him by carrying his bulky equipment around.
‘I have been greatly impressed by their honesty, courage and conviction not to let HIV dominate and define their lives.’ The impetus for my latest project: Stand Tall, Get Snapped was the impact on me of taking PEP (post–exposure prophylaxis) after exposure to HIV, following impulsive unprotected sex with a partner who I thought/knew was HIV positive. This medication had severe and very unpleasant side effects, which aroused intense feelings and speculations on my part, as to what it must be like to live with a positive HIV diagnosis. As a direct result, I determined to undertake this project with 2 main aims: firstly, to expose the still widely held misconception that HIV is largely restricted to gay men and people of black African origin. Secondly, to afford affected individuals a unique opportunity to share their experiences and to have their positive status recognised in a very public way by being included in a photographic exhibition. I have been greatly impressed by their honesty, courage and conviction not to let HIV dominate and define their lives; as well as their very positive approach to living with a potentially fatal condition. A group of male, female, black and white volunteers came together to demonstrate 38
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how the virus has affected diverse sections of British society. I visited the 30 HIV positive people in their home locations and photographed them in settings, intended to illustrate their individual stories. This number is highly significant as it reflects the number of years that have passed since the first publicly acknowledged man – Terry Higgins - died with AIDS in UK. The project was trialled on the 30th May 2012, during the Gay Pride Festival in Soho, London, where several of the participants appeared to discuss their HIV status in public for the first time. They received very encouraging and supportive feedback, as did the overall the aims and concept of the project. It has also been the subject of broad comment and discussion on the internet. http://standtallgetsnapped30hivpeople. tumblr.com The photographic exhibition will be formally launched at the Reading Room, www.readingroom.com/gallery 65-66 Frith Street, Soho, London, W1D 3JR at the end of November and will be available for viewing to the public until January 2013. After this, it will tour to various major cities with significant numbers of people living with HIV. Timings and locations will appear in the press later in 2012, once arrangements have been finalised. Please make the effort to visit our exhibition and I am sure you will find the portraits of these brave individuals and the accompanying statements of their personal stories to be as moving and uplifting as I have and, remember: play safe, have fun and be well.
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Summer 2012
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.
Leeds Skyline is committed to providing quality services for anyone living with or affected by HIV living in Leeds.
Waverley Care is here for you – Contact us now for more information
Waverley Care, 3 Mansfield Place, Edinburgh EH3 6NB Tel: 0131 558 1425 Email: info@waverleycare.org www.waverleycare.org
Our support service includes: 121 emotional support, advice, information and advocacy on a number of issues including HIV medication, housing, benefits. We also offer practical support and befriending on discharge from hospital. We provide a number of support groups, drop-in sessions and workshops to help improve your well being and support you to develop coping strategies. We offer complementary therapies City centre venue. Confidential and welcoming environment. Please contact us for further information: Tel: 0113 2449767 Email: leedsskyline@theBHA.org.uk Web: www.leedsskyline.org.uk Twitter: @BHAleedsSkyline
Scottish Charity No. SC036500
congratulates
Asunta Wagura, Executive Director of KENWA (Kenya Network of Women with AIDS) for carrying the Olympic torch in Solihull on July 1st 2012. The BASELINE team was proud to be there, showing this remarkable woman support for the great work she does.
Jane Bruton (centre) from Chelsea and Westminster Hospital for winning the Gilead Nursing Award HIV Nurse of the Year
Summer 2012
George House Trust for their recent relaunch
Positive East for keeping HIV on the agenda in Parliament
www.baseline-hiv.co.uk
Dr. Joseph Healy
Squeezing until the PIP squeaks – Disability benefit and the HIV positive community As a gay man living with HIV since at least 1990, when I was diagnosed, I have always been extremely grateful and reliant on Disability Living Allowance (DLA) – as have many others with HIV for whom it has been a life raft since it was introduced in 1992, ironically enough by Mrs Thatcher’s government. It is a benefit which is not means tested and which allows HIV positive people to return to work, parttime in my case, and still be assured that if they are unwell or unable to work full-time that they will have something to fall back on.
‘Many long-term recipients of DLA will not be eligible for PIP under the new harsh testing regime, which resembles the “computer says no” scenario from Little Britain.’ Several years ago I attended a meeting organised by Terrence Higgins Trust when it seemed that many of us who had been awarded DLA for life, could have that benefit stripped from us. There were people there, some of them in their 70s, with real terror in their eyes. Many had given up jobs and life insurance and for them, DLA is the only guarantee of any sort of quality of life. A recent article in the Guardian also referred to this. The new Welfare Reform Act intends to abolish DLA from next year and replace it with PIP, Personal Independence Payments. It is clear from debates during the passing of the legislation and from Department of Work and Pensions statements since, that the aim is to remove half a million recipients from DLA. Even worse, ATOS Medical 42
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Services, whose cut throat methods have recently been exposed in the Channel 4 ‘Dispatches’ programme and elsewhere, have been given the contract to assess who should and should not receive PIP. The quota will be what drives the assessment and not any real need. The process will start from next April with face-to-face interviews. It is likely that many longterm recipients of DLA will not be eligible for PIP under the new harsh testing regime, which resembles the “computer says no” scenario from Little Britain. What is even worse is that DLA is a gateway benefit, thus those refused PIP will also lose subsidised travel, housing benefit and many other benefits and be cast into the grinder of being dependent on Employment and Support Allowance. The impact, both in terms of mental and physical health, for many people living with HIV will be huge. It is vital that people living with HIV join the campaigns being mounted against these huge benefit cuts and the demonisation of disabled people by the anti-cuts and disability movements. In Greece, for example, because of the severe cuts, only those whose CD4 cell count is below 200 receive benefits, with the result that some are allowing their health to fail to access food etc. Two organisations I am involved in are Coalition of Resistance, the national anti-cuts campaign and Queers Against the Cuts, fighting against the cuts for LGBT people, many of whom are HIV positive. We must fight together or we will sink together.
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www.coalitionofresistance.org.uk http://queersagainstthecuts.wordpress.com www.dpac.uk.net +++-
Summer 2012
I WISH I’D
TOLD HIM
THE WHOLE STORY...
Have you discussed everything that you wanted to? If something is bothering you about your anti-HIV medication, your doctor or nurse can help you deal with it. Find out more at www.yourstoryyourscript.co.uk
Don’t leave today with a weight on your mind YOUR YOUR STORY, STORY,YOUR YOUR SCRIPT SCRIPT April 2012, VIUK12NP067
Question:
Hi, I’m a 22 year-old gay man living in London. I’m not in a relationship but I’m worried about catching HIV. What is the drug that stops you acquiring HIV and how can I access this? What are the risks and disadvantages?
Answer:
The drug you have heard of is called Truvada. This is a pill that contains two HIV drugs – tenofovir and FTC. Both these drugs are widely used as HIV treatment. Several studies showed that Truvada can reduce the risk of sexual transmission when taken every day by people who are HIV negative. On the basis of these studies Truvada was approved last month in the US for use as PrEP. PrEP stands for pre-exposure prophylaxis. Truvada has not been approved in Europe for use as PrEP. However, because it is already licensed as a medicine, it can be prescribed under certain circumstances. Most of the results about effectiveness and safety in gay men come from a large study called iPrEX. The study focussed mostly on young gay men who were at high risk of catching HIV. They were generally young, having many partners, rarely discussing HIV or using condoms and who drank a lot of alcohol. They were also given condoms with support on the importance of using them. In the study overall, the risk of catching HIV was reduced by 40% in people using Truvada compared to the inactive dummy pill that half the participants were given. But many people didn’t take either the Truvada or the dummy pill. When people who actually took Truvada were looked at 44
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(compared to those who just said they were taking it) protection increased to over 90%. So these results looked good, but you also asked about the risks and disadvantages. One is that PrEP is unlikely to be 100% effective, even with perfect adherence. So there is likely to be a continued risk. The US approval was clear that PrEP should be used as part of a package of ways to reduce HIV, including condoms, and condoms may still be more effective. However, there were very few side effects in the studies and most of these were mild. The risk of developing drug resistance in people who still become positive while taking PrEP, is a real concern, but again this was not seen in the study. Using PrEP will require frequent HIV testing. PrEP may provide a new option and this is important, but anyone wanting to use PrEP, now or in the future, would have to discuss advantages and disadvantages in more detail with a doctor. Although UK surveys show that about 50% of gay men are interested in PrEP, at least 25% are actively against the idea, so it will no be for everyone. Another disadvantage – certainly in terms of getting PrEP free on the NHS – will be the cost. These drugs are not always available for HIV positive people to use. So how they may become ++
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Summer 2012
Rebecca McDowall
i-base 0808 600 8013
ask a question more widely available is not clear, even if approved in Europe. For example, the NHS may want a UK study first. There are plans for one large study to start later this year. If and when this happens, this will probably be the easiest way to get to use PrEP. However if you feel that you are at high risk of getting HIV and for whatever reasons this is likely to continue, this would be a reason to see a doctor at a clinic that has both GUM and HIV services. If you have already used PEP (post-exposure prophylaxis) several times and continue to be at risk, this would be important to discuss. If available, access will only be on a case-bycase basis but if a doctor in the UK believes there is a medical benefit PrEP can be prescribed based on individual circumstances. But it is not clear how this would be funded or who will pay (unless you are able to pay privately). The NHS is going through major changes and this includes separating some HIV services from GUM clinics. In some cases GUM services are being contracted to private companies like Virgin Health. For more information about both PrEP and PEP, including to reports from the studies that led approval in the US, see this link. http://i-base.info/pep-and-prep www.baseline-hiv.co.uk
by email, online or phone
questions@ i-Base.org.uk www.i-Base.info/qa
0808 800 6013
take control of your treatment
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Mark Taylor
Equality before the law? With the loss of the Immigration Advisory Service and Refugee Migrant Justice last year, the availability of free professional immigration advice is harder to come across. For any asylum seeker that advice can make the difference between being granted asylum or not. For those asylum seekers who are HIV positive – often stigmatised by their own communities as well as the host community – the challenge of presenting their claim can sometimes be overwhelming. A brief synopsis of the current position by Mark Taylor, Executive Director of The Taylor Partnership – www.ttplaw.co.uk and email mark@ttplaw.co.uk HIV is a chronic illness. That, effectively, is the position of the Courts both in the UK and in Europe when deciding claims for asylum. Quite often the immigration courts lag behind changes in society or circumstances but, here, they could claim to be ahead of the game: equality before the law, HIV positive asylum seekers are treated exactly the same as others with a chronic illness. For HIV status, itself, to have an impact the prognosis for life expectancy must be poor (a low CD4 count, high viral load). Thankfully nearly all of the HIV positive asylum seekers I see are taking their antiretroviral therapy and are well. But would they be so well if they were returned to their country of origin? Maybe not. However, the Courts take the view that the possible curtailment of life expectancy (unless there are exceptional circumstances) cannot be a reason for asylum. Whether we agree with the Courts or not, the fact remains that this is the legal position (and it is unlikely to change). When I meet HIV positive asylum seekers my first job is to manage their expectations. Quite often they arrive in my office with a generic letter from their Sexual Health clinic www.baseline-hiv.co.uk
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confirming their status and that they are taking antiretroviral medication – they believe that this will secure their claim for asylum. For someone already struggling with their HIV status to be told that their letter is, in itself, worthless in terms of their asylum case can be devastating (especially when they are faced with the prospect of limited availability of medication in their home country). Presenting a claim for asylum is akin to being a detective: piecing together various bits of evidence (circumstantial, objective and direct) to demonstrate that, even to a low threshold, that the claimant is likely to be persecuted should they return to their country of origin. Whereas HIV status in itself may not assist in this exercise, the fact that an asylum seeker is HIV positive may be symptomatic of another, underlying issue which may be relevant. For example, in the case of many sub-Saharan women who are HIV positive, the incidence of rape and violence is high. The trauma they have suffered prevents such women from talking openly about the terrible events they have suffered without professional support but it is essential to draw this out. If the Home Office and the Courts are not given the facts of the case, we cannot be surprised if an application is refused (medical evidence in terms of trauma, post-traumatic stress disorder and counselling is vital). Similarly, the Supreme Court has taken a very sensible view in terms of asylum seekers who are gay – if they would have to hide the fact that they are gay in their country of origin, this would represent a breach of their human rights. Looking beyond HIV status is, therefore, crucial in the search for extreme and extraordinary circumstances that might demonstrate eligibility for asylum. Equality before the law? You tell me. ++
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oin More than 20,000 Community Leaders, Scientists, outh, Researchers, and Advocates and Play Your Part to Change the Course of the HIV Epidemic
GET INVOLVED IN AIDS 2012! FOR MORE INFORMATION AND TO REGSITER VISIT
www.aids2012.org
Ten Top Tweets (of around 80,000) from AIDS 2012 DigitalNewsTikr @DigitalNewsTikr Journalists need to be talking with people who have #HIV #AIDS to get the full story! #AIDS2012 via @ICFJKnight- 4 Aug kelsey meyer @meyerkd Trying to explain my volunteering and learning experience at #AIDS2012 is quite the task. People don't realize #HIV #AIDS is still major !!! – 3 Aug Greta Hughson @gretahughson My work here is done - now I can sleep! MT @aidsmap Our final bulletin from #AIDS2012 is now online in six languages: http://bit.ly/Omy6ot Maseda Ratshikuni @masedar "@TrialogueSA: Keeping children in school shows impact on HIV risk behaviours in Kenya: http://ow.ly/cxsDh #Aids2012" @NedbankChildren 2 Sigrun Møgedal @GPGHRH Strange that so many established leaders talk about empowering youth leadership without risking 2 share power #AIDS2012 @UNYouthRep @_GYCA_ 2 aug lga Szubert @OlgaSzubert AIDS Conference: New Voice Needed in Eastern Europe and Central Asia http://huff.to/OIV5y0 via #AIDS2012 #harmreduction #hiv #aids 2 Aug AIDSmeds @AIDSmeds Top Stories : Defining Domestic Violence Among Gay and Bisexual Men and the Link to #HIV http://ow.ly/cGwZq #AIDS2012 UN Development @UNDP Faith-based organizations provide up to 70% of basic health services in some countries http://bit.ly/SXGTlN #aids2012 v@UNFPA Wim Vandevelde @VandeveldeWim #AIDS2012: Intl coalition issues “Washington Call for Access to #HCV Diagnostics, Treatment and Care for All!” - http://goo.gl/JOqUl 30 July CHANGE @genderhealth "The man decides when and how to have sex."--Teresia Otieno on gender inequality in Kenya #AIDS2012
Andy Hilton
NLTSG to offer support weekends for newly diagnosed people The National Long-Term Survivors Group (NLTSG) (www.nltsg.org.uk) has been running for 20 years, bringing together people diagnosed with HIV for 5 years or longer from all over the UK. During that time members have amassed a wealth of knowledge and life skills to help cope with the emotional and physical ups and downs of living with HIV. Now it’s time to pass on some of those skills and experiences to people who have not yet had time to develop their own strategies: people recently diagnosed with HIV. The spread of HIV in the UK has far from subsided. In 2010 more than six thousand people were newly diagnosed HIV positive. There is little evidence that the number is likely to start falling anytime soon. What has changed since the early days is the outlook for people living with HIV. With the introduction of effective drug therapies in the mid’ 1990s the general message changed from “you’re going to die, make the most of you time left” to “you’re going to live, plan for your future and make the most of your life.” With the right medical and social support people diagnosed with HIV can now live a full and rewarding life. But receiving a HIV positive diagnosis remains devastating for some; it can be a time of confusion and fear for the future. To help face those issues NLTSG has developed a residential weekend at a large country house in Staffordshire for anyone recently diagnosed to help them explore the issues around living with HIV. We provide a safe and friendly environment to meet and support other people who are learning how to live with HIV. Participants will leave feeling that they have the knowledge, skills and attitude to look forward to a positive future. The specific aims are to: • Explore some of the common key issues facing people living with HIV, such as sex and transmission, medication, stigma and disclosure. • Provide an opportunity to spend time thinking about their personal attitude to HIV and www.baseline-hiv.co.uk
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to develop personal strategies to live a positive healthy life. • Meet other recently diagnosed people and long-term survivors to share stories and develop supportive networks. We offer workshop sessions on the key themes of living with HIV and group discussion sessions but there’s plenty free time for socialising and networking (we find on our long-term survivors Living Proof weekends that this is where much of the ‘good work’ is done!) Participants will also have the opportunity to spend some one-to-one time with a trained counsellor to address any personal issues privately. The weekend starts at lunchtime on Friday and finishes mid’ afternoon on Sunday. We are not putting a strict definition on ‘newly diagnosed’ but would anticipate that participants will have had an HIV diagnosis for less than 2 years and are still coming to terms with the diagnosis. We are happy to take referrals from HIV support organisations and also welcome individuals contacting us directly. We hope that many of the participants will come from the more remote areas of the UK where there are no local HIV groups offering the support that newly diagnosed people need. The weekends are partially funded by the Monument Trust and Awards for All. We ask for a contribution of £50 per person towards the running cost of the weekend but we will not exclude anyone who cannot afford to pay. We can also pay travel costs where necessary. NLTSG has a policy of being totally inclusive and welcome people from any social or demographic background. The dates for the weekends are 2-4 November 2012, 31 May–2 June 2013 and 8–10 November 2013. If you are newly diagnosed or work for an organisation supporting people living with HIV, please contact us for further details at mail@nltsg.org.uk or 07967 430797. ++
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49
HIV Life Assurance is here to stay! Over the last ten years I ‘ve been contacted by hundreds of HIV medical professionals, support - and charity workers looking for financial advice for their patient or client. Most of these people have been looking to buy a home, or protect their families. Until recently its been very difficult to find mortgages and insurance products for people living with HIV. It’s only really since 2009 and the introduction of HIV life assurance products that the situation with HIV life assurance and HIV mortgages has become easier.
’82% of HIV positive people in the UK still have no life assurance.’ Thembani is an example of a recent case we helped protect her family with life assurance. She is working as a nurse and wanted to take out life assurance that would pay out into a trust fund for her children, should anything happen to her. Thembani told BASELINE ‘It was only recently that I became aware that life assurance now existed for HIV positive people. I remember asking my bank about life assurance many years ago, but became scared of making an application because they asked many questions about HIV on their application form’. ‘I’m very concerned that if anything should happen to me that my two children are looked after. It has been on my mind since I was diagnosed with HIV in 2007 to try and make some form of provision, but for one reason or another I just haven’t managed to put it in place’. There are an increasing number of life assurance companies offering HIV life assurance, but their terms and conditions vary by a huge margin. As life assurance has become more 50
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available it has opened up the mortgage market for HIV positive people who may have felt excluded before. Recent research by Unusual Risks has shown that 82% of HIV positive people in the UK still have no life assurance compared to the wider community where this figure is 52%. It is also estimated that at this moment only 20% of HIV positive people are even aware the product exists. Our latest research shows the average amount of HIV life assurance that is being taken out is £134,667, which compares favourably with the average gay life assurance of £242,578 when you consider the product has only been available a couple of years. The groups most likely to take out HIV life assurance are people buying new properties with mortgages, families with young children and longterm partners who are financially dependent on each other with rent and debt payments. Unusual Risks has a policy of researching every mortgage and insurance provider on your behalf before recommending a product. We offer independent financial advice, without any fear of discrimination towards creed, colour, gender, nationality, sexuality or health status. So Thembani? We arranged a HIV life assurance policy in trust to her two children for a sum assured of £150,000 at a premium of £81.50 per month. We also offered quotations for £50,000 of cover at £28.85 per month and £100,000 of cover at £55.16 per month. Unusual Risks support worthy causes and HIV charities, such as NAM/AIDSMAP from every HIV life assurance and HIV mortgage that we arrange on your behalf. We also offer an introducer scheme for any HIV support worker or medical professional
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Summer 2012
Chris Morgan
to earn donations for their registered charity. Our new brochure contains details of our charity scheme. 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
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 51
Up the Ashby! New Joint Venture on British Waterways
For the first time, BASELINE magazine and the National Long Term Survivors Group (NLTSG) joined forces to run a weekend on a narrowboat on the Ashby Canal; the result was unanimously agreed to be a great success. In contrast to Her Majesty’s Diamond Jubilee flotilla on the Thames, we enjoyed glorious weather, mercifully less traffic, and no one had to go to hospital afterwards. True, one person fell overboard, another fell out of bed and a few glasses were smashed in one of the more severe crashes into bridges.
‘It was the warm, caring interactions between individuals… the sharing of knowledge and experience of living with HIV… joys and woes… successes and set-backs… that made the event so special.’ The narrow boat was aptly called Bosworth - our route passed alongside the ancient battleground of Bosworth Field where in 1485 Richard III, according to Shakespeare, would have given his kingdom for a horse in order to continue fighting a battle that with his superior numbers he really ought to have won. Of course he lost, and the Lancastrian Henry Tudor not only ended the 30 years’ long War of the Roses, but also merged the two dynasties by marrying Elizabeth of York. After 500 years there is nothing much to see of the skirmish, so…not having metal detectors to 52
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search for hidden treasure… we quietly slipped by. Our crew was made up of an interesting mix of gender and generations coming from as far north as Cumbria and as far south as Exeter. Although the boat company’s glossy publicity brochure indicated the vessel had a sleeping capacity of 10, we managed to accommodate the maximum licenced number of 12 passengers; essential to make the event viable. The one person who fell out of his tiny bunk happened to be me; fortunately, nothing was damaged other than my pride. It says much of the genial character and spirit of goodwill amongst this swiftly formed ensemble that there were no complaints about sleeping arrangements nor about the diversity of nocturnal sounds from so many in so small a space. If sleeping accommodation was somewhat cramped, this was more than compensated for by the wide expanse of the great outdoors which greeted us each day. The pure clear light of a cloudless blue sky enhanced the clarity of the passing, breathtakingly beautiful scenery. Banks of white hawthorn cascaded into the still mirrored surface of the water doubling its dramatic effect. Fields of Van Gogh yellow spread to the horizon contrasting vibrantly
Maurice Greenham
with the intense heavenly blue and myriad shades of hedgerow greens. Passing through Gopsall Wood was like sailing into an enchanted emerald paradise with shafts of brilliant sunlight adding patches of shimmering gold. Wildlife flourished everywhere, with water birds and farm animals adding a lively diversion to the idyllic pastoral scene. In the distance the faint sound of a cuckoo could be heard; close by, the cheerful quacking of ducks. Perhaps the most delightful sight was our encounter with families of ten, tiny baby ducklings and four young cygnets with their respective proud parents. As for food, this was in plentiful supply thanks to excellent forward planning by the BASELINE team and the generosity of individuals who contributed more items than could comfortably be consumed in one weekend. David’s Friday night chilli–con-carne with rice and salad was a triumph, as was his imaginatively presented pea and mint soup with croutons that served as a starter for Saturday night’s Barbecue. Derek acted as a very able sous-chef and ever yone
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assisted in helping out with the main course once we had moored and got the easy-light fires going on the canal towpath. This happened just as night fell in the depths of rural Leicestershire. Magical! Breakfast on Sunday morning was taken on the move because we had decided to make an early start to be back in time for lunch and trains. Andy took the tiller whilst early risers helped with the cooking. Our final meal was at the Hinckley Marina, wisely suggested by Julie. Here we were able to enjoy a delicious meal from the carvery by the side of the canal; a blissful end to the trip by sitting down and enjoy someone else’s cooking with no washing up. Of course, paramount to the weekend’s success was the company. It was the warm, caring interactions between individuals… the sharing of knowledge and experience of living with HIV… joys and woes… successes and set-backs… that made the event so special. Conversations over the breakfast table, lively banter with hilarious laughter on the outer decks and the quiet shared thoughts around the warm red embers of the barbeque in the still of the night – these will be the cherished memories of an unforgettable weekend where old friendships were reforged and new ones formed. Brilliant!
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Basic Care for dogs
Dogs are by far the most popular pet in the UK, and more than 8 million of us have one! There are over 200 different breeds recognised by the UK Kennel Club. The most important thing when deciding to get a dog is finding one that will fit in with your lifestyle, it’s no good choosing a collie if you are unlikely to do much exercise or picking an Irish wolfhound if you live in a tiny flat. Once you’ve got your dog you’ll want to keep them in the best of health, so here are some basic dog care tips.
Exercise Dogs need to exercise at least once a day, but of course it all depends on age and breed; puppies and older dogs need less exercise, small breeds and very large breeds need less exercise as well but that’s not always the case with terriers! Identification By law in the UK every dog must wear a collar with the name and address of the owner on. The only dogs exempt from this are working, service or hunting dogs. Telephone/ mobile numbers are optional but it is the quickest way for someone to get in touch with you if they find your dog. Diet There are a wide variety of dog foods available, from complete diets, wet, semi moist and dry foods, with or without biscuits and homemade foods. Each of these has its own drawbacks and benefits that you must consider as a dog owner. Regardless of diet water should always be available and any change in diet should be made gradually over at least a week. 54
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First Aid First Aid for dogs is basically the same as for humans. If there has been an accident check the area to see what’s happened. Has there been a road traffic accident? That means the dog might have broken bones, so be careful if you need to move the animal. Is there another dog around? Have they attacked your dog? Is there any food that they could have eaten and been poisoned by? Is the dog injured but still conscious? Do you need to restrain the dog to tend to it or get help? If so find a strip of material/ rope/ string, pass it over the muzzle crossing under the chin and tie behind the head. If the dog does not seem to be conscious then pass to the ABCs Airway; Clear the airway. Lay the dog on their side, tilt the head back and pull the tongue as far forward as you can. If you can see anything in the mouth try and remove it. Breathing; If the dog’s not breathing, close its mouth and cover its nose completely with your mouth. Breathe until you see the dog’s chest rise. Give the dog four or five breaths and check to see if they’re breathing on their own. If not move to chest compressions and repeat the breaths. Circulation; The dog should be lying on their right side. Place one hand over the heart on the rib cage, where the elbow touches the rib cage/ or at the widest part. Compress the dogs chest about an inch (apply less force for a smaller dog) at about 2 compressions a second and alternate with breaths.
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Eleanor Parkes
Veterinary Care
Microchips Microchipping is a permanent identification pellet about the size of a grain of rice which is injected under the skin on the base of the neck. The chip is mainly injected without anaesthetic but is often carried out at the same time as dental work or neutering. Some vets make microchipping free when this happens. The microchip has a unique ID number which is scanned (like a barcode) when a dog is found. The chip contains the owners address and details. Microchips are also used for everything from fish to horses.
‘It’s no good choosing a collie if you are unlikely to do much exercise or picking an Irish wolfhound if you live in a tiny flat.’ The Dogs Trust currently offers free microchipping at each of its rehoming centres, contact your local centre to find out how and when you can get your dog microchipped. Neutering Neutering in female dogs removes both the ovaries and the uterus, in the male dog it is the removal of the testicles. If you don’t plan on breeding or showing your dog then neutering is the best option, not only does it stop the risk of unwanted litters and specific cancers, it also reduce behaviours such as territory marking and roaming. Of course your dog being unable to get pregnant also stops the possibility of vet fees if there is a complication with the pregnancy and birth and all of the costs of a litter. www.baseline-hiv.co.uk
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If you are on benefits many places allow you to either have your pet neutered at a reduced cost or for free, Friends of the Animals, RSPCA and Dogs Trust each offer subsidised neutering. Dogs Trust also take on special cases if a letter is sent to the Campaigns Department detailing why assistance is needed. Vaccinations Puppies should be vaccinated at around eight weeks, and again at ten weeks, these vaccinations protect against Canine Parvovirus, Distemper, Canine hepatitis and Leptospirosis. All of these apart from kennel cough can be fatal, and so dogs generally have a booster vaccination once a year. Dogs that are leaving the country also require a rabies vaccination. Parasite Control Most dogs will get fleas during their lifetime, and many dogs develop an allergic reaction to flea bites. Just checking your dog for fleas by eye is not that reliable because for every adult flea that you see there are many more eggs and pupae in the house, and adult fleas can live for up to two months off of an animal. It’s recommended that dogs be given some kind of anti parasitic treatment every couple of months, the most popular being Frontline, Advantage and Bob Martin. It’s also really useful to treat your home with a household aerosol or spray to kill any eggs or pupae that have not yet hatched. The next edition will be looking at basic care for cats. If you have any pet questions or problems, please email in! editor@baseline-hiv.co.uk ++
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Why should we care about social care? Social care is one of those things that affects other people right? Older people without families? Disabled people in care homes? Children in wheelchairs? So why should you or I care about social care? Because social care doesn’t just affect other people. Social care is something, which any one of us could need at any point in our lives. It is the help that we give to those amongst us who are struggling. It is not an exaggeration to say that how compassionately and effectively we provide social care speaks to the nature of our society. NAT cares a lot about social care – and we want to explain to you what social care really is, why it is relevant to all of us, and what the current state of social care for people living with HIV in England is like. Some of the impressions you may have of social care through the media are true. Social care does help older people who can no longer cope on their own. It does provide residential care and practical assistance for those people whose disabilities mean they cannot live unassisted. However the support provided in these scenarios is only the tip of the iceberg. The term ‘social care’ covers a myriad of support services from counselling to help with cooking and cleaning, to support accessing benefits, to respite care, to peer support, to advocacy and so on. You get the idea. This support should be available to everyone who needs it, and some people will need it as a result of living with HIV. When we think about the early days of the HIV epidemic it is not hard to imagine the type of support people needed. Without effective 56
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treatment, social care was about supporting people with a terminal condition. However now, in an era where (in the western world at least) an HIV diagnosis does not have to affect your life expectancy or prevent you from living a full and active life, social care has taken on a very different role. People living with HIV may need support or help in any number of situations. Emotionally HIV can be very difficult to cope with, not only at diagnosis but when starting a new relationship, when changing medication, when disclosing to family or friends, if you experience stigma or discrimination. And we know that depression and anxiety are more likely to affect people living with HIV than the general population. There are many services that can help; peer support programmes, counselling, advice lines to name a few. Just having someone to talk to who understand what you are going through can be invaluable. Social care can also provide more practical support for people who experience side effects of their medication, or symptoms of HIV-related illnesses. Support such as assistance with daily living, shopping, cleaning, and cooking for those experiencing fatigue, neuropathy, or gastrointestinal problems for example. Many people with HIV also struggle to cope because of poverty. Some people may find it hard to work because of their symptoms, some may have faced discrimination at work, others may be unable to work because of their immigration status or their family commitments. Whatever the reason,
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Summer 2012
Laura Dunkeyson
people with HIV are disproportionately affected by poverty. Poverty can cause a whole range of social care needs; housing problems, benefits advice, childcare issues, debt issues. Social care can guide you through the maze-like welfare system, it can provide someone to advocate for you and help you find solutions. It can stop you from being sucked further into the spiral of poverty. If you are helped with these issues, you are also as a result helped to take care of your health, adhere to medication and manage your condition well. So, we can see why social care is important for people living with HIV, and why we should all care about social care. But what is the reality of social care in England today? How do people living with HIV get social care support? Are they able to get the help they need? Over the last six months NAT has been investigating how local councils spend the funding they receive from central Government for HIV social care. In April we published the report ‘HIV Social Care in England: a survey of local council funding’. The research not only set out what services are available across England but also highlighted some very interesting trends in social care provision that we should all be aware of. Traditionally a lot of social care has been provided through local councils, particularly if you need support from a social worker, practical assistance, or psychological support. However in order to access these services people’s level of need is assessed and they must meet the www.baseline-hiv.co.uk
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local council’s eligibility threshold. Increasingly eligibility thresholds are being set at ‘substantial’. Our research found that 85% of local councils now set their threshold at ‘substantial’ or higher.
“If you would like to help us protect social care join our activists network and take action with us.” Last year we asked HIV clinicians about their experiences of their patient’s ability to access social care. One wrote: ‘social care funding is very restricted and not everyone fits the criteria – even though they do need help’ and this sums it up perfectly. People living with HIV are often in need of help, but they are often not assessed as being in severe enough need to be eligible for it. The result is that people are not able to receive help until they are at crisis point. This is particularly dangerous for people living with HIV. It is widely acknowledged that social care at an early stage of need prevents an issue becoming very serious, very dangerous and very costly. For people living with HIV social care can help adherence to medication, which keeps the viral load suppressed, maintain health and reduces infectiousness. It is vital that people have access to support when they first need it, not when their problems have got so severe that they are in serious trouble. Fortunately, there is another way of accessing social care, separate from the local council’s individual assessment process. Most councils 59
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also fund voluntary sector organisations to provide social care for people with HIV which anyone can access – services like peer support, welfare and housing advocacy, and counselling. To find out what help and support is available in your area visit our Life with HIV website www.lifewithhiv.org.uk Over the coming months the Government is going to set out their plans to reform social care in England. We don’t yet know what their proposals are going to look like, but rest assured NAT will be doing everything we can to make sure open-access, specialised services are valued, the preventative value of social care is not only acknowledged but incorporated into systems, and national eligibility assessment processes are able to take account of the complexities of HIV, so people living with HIV receive a fair assessment. We will be looking at the way councils assess individual’s eligibility for support to make sure they understand HIV and the process treats people fairly, and campaigning with others to ensure local councils continue to fund the open-access services that are so vital for so many people living with HIV. If you would like to help us protect social care – because, let’s face it, we never know when we may need some help ourselves – join our activists network and take action with us. To read NAT’s research visit the social care page of our website: www.nat.org.uk and for more information on our activists network visit: www.lifewithhiv.org.uk +++-
Summer 2012
ABplus is a peer-led service, which provides support for people living with and affected by HIV.
. .. .
Our services include:
Drop-in service every Monday and Friday from 10-3pm, with a free lunch and access to food bank for people experiencing financial hardship. Peer Support Groups. Referrals to HIV specific agencies, that deliver from our premises for support work regarding health and social care, such as benefits advice and housing. Opportunities for volunteering.
Our services are free and confidential. 29/30 Lower Essex Street Birmingham B5 6SN 0121 622 6471 enquiry@abplus.org.uk www.abplus.org.uk
Registered Charity No: 1068191
Robert Fieldhouse
news: hepatitis Approval for Gilead’s sofosbuvir (GS-7977) expected next year
Gilead Sciences looks set to file for regulatory approval for its hepatitis C polymerase inhibitor sofosbuvir (GS-7977) by the middle of next year. If successful, the initial indication will be for 12 to 16 weeks of treatment with sofosbuvir/ribavirin in people with hepatitis C monoinfection with genotype 2 or 3 viruses. The license will cover people who have never taken treatment before and people who are treatment-experienced. The drug will likely be initially licensed for 12 weeks of treatment with sofosbuvir/pegylated interferon and ribavirin in people with hepatitis C mono infection with genotype 1, 4, 5 & 6 who have never taken hepatitis C treatment before. Licensing will be based on the 4 phase III studies that look set to be completed by mid’ 2013.
Gilead to study sofosbuvir with GS-5885 as a fixed-dose combo
Gilead Science recently announced that they are advancing sofosbuvir in combination with GS-5885 for the treatment of people with hepatitis C mono infection with genotype 1. GS5885 is an inhibitor of the hepatitis C virus (HCV) NS5A protein. A spokesman for the company told BASELINE, “we have successfully co-formulated both into a single pill fixed dose combination (FDC).” If the phase I data show that the fixed dose combination results in adequate exposures of sofosbuvir and GS-5885, Gilead expect to initiate a phase III study with this fixed dose combination in the fourth quarter of this year. Agreement has been achieved with the US and European regulators on a comprehensive phase III development plan for sofosbuvir in combination with GS-5885. The fixed dose combination regulatory filings could follow the initial sofosbuvir filings a year later, by mid’ 2014. 60
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BMS suspends development of hep C drug
Bristol-Myers Squibb has halted clinical trials for its novel nucleotide polymerase inhibitor, BMS-986094, for which there had been high expectations as it was acquired as part of the $2.5 billion acquisition of Inhibitex announced in January this year. In the clinical trial, a patient developed heart failure. BMS is examining all patients in the study because it has not determined the cause of the heart failure or whether it was linked to the investigational treatment.
HCV rate in gay men in Amsterdam down
The outbreak of hepatitis C virus (HCV) gay men with HIV in Amsterdam, which researchers have been following for the past 15 years appears to have leveled off since 2007, possibly due to increased testing and treatment. HCV is transmitted through contact with blood – extremely low levels or none is typically found in semen. The risk factors for sexual transmission of HCV include unprotected anal sex and fisting, having other sexually transmitted infections, and recreational drug use; but low levels of injecting drug use have been reported. The proportion of HIV positive gay men living with hepatitis C gradually increased from 2.8% in 1995 to 3.8% in 2003, reaching a peak of 17.3% in 2008. 2006 saw the highest rate of new cases – at 14 per 100-person years- new cases have slightly decreased since that time. Researchers suggest reduced high-risk behaviour, earlier testing, increased HCV treatment, and “saturation” within the group at highest risk may have contributed to the leveling off.
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Summer 2012
Confidential Support & Advice Barnsley’s 1st local support group, supporting people living with HIV in our Borough
Confidential Support & Advice
For further information contact
me
Barnsley’s 1st local support group, supporting people living with HIV in Counselling our Borough positive about change
www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710
for you…
For further information contact
me positive about change
Does life feel like it’s getting on top of you? Could you benefit from a place to take some time-out? ... to explore your thoughts and feelings Joel Korn has been a practising counsellor in London for the past 6 years. Joel is committed to providing counselling, group therapy and training.
www.plusme.org Email: info@plusme.org Tel: 01226 320148
Joel is commited to offering counselling in a safe, confidential and non-judgemental environment, working therapeutically with a range of one-toone clients on a wide range of issues.
Registered Charity 1129248 Company by Guarantee 06772710
Consulting in north and central London. Mobile: 07787 226 376 Email: kornjoel@hotmail.com Website: www.2-life.co.uk
Roberto Messuti II
Going down the Vortex
During many years I have seen How many of my acquaintances And even good friends Have gone down the vortex... At first I did not realise this Then with time I heard comments Gossips as some like to say On the people who Had gone down the vortex
Or just their own low self esteem? Drugs... a temporary escape route To end up more depressed and poorer Drugs can lead to a loss of consciousness Taking health risks And ending up in a Deeper and stronger vortex
The gay scene can be a trap A dangerous trap Where we all try our best To pull the right person Who is going to bring happiness? Into our lives Without going Down the vortex
The vicious circle of This vortex doesn’t Allow us to see The consequences Or is it that nothing matters no more Than to be seen? Than to be admired? A part of the vortex
Many have gone down Due to drugs And AIDS And I ask myself What was it that Made them go down the vortex? Lack of home education? Loneliness? Bad experiences? 62
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Beauty And I mean the physical beauty Doesn’t last long Nor does the good health Nor do fair weather friends Who at the end of the day Will enjoy seeing you Going down the vortex ++
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Summer 2012
tion nfec Co-i ce n s i e t r i nfe / Hepat by A Co V eded BHIV nt of HI V H G l prec a u e B n n m d n e A a g n ndo Fifth e Mana ith B A S L , Lo h w t n ntre e io C for t 2 a 1 e or 20 nc
llab ber fere in co Octo eet Con ay 3 tr S d s e e n rg Wed eat Geo Gr One
ANNOUNCEMENT
BHIVA AUTUMN CONFERENCE including
CHIVA Parallel Sessions 4–5 October 2012 QUEEN ELIZABETH II CONFERENCE CENTRE · LONDON Introduction BHIVA is delighted to announce its 2012 Autumn Conference, which will be held at the Queen Elizabeth II Conference Centre, located in the heart of Westminster. Dr Annemiek de Ruiter has kindly agreed to serve as the 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: ▶ ART treatment as prevention in the UK ▶ Intimate partner violence and HIV ▶ HIV, HAART and pre-term delivery ▶ Do cancer patients with HIV die sooner? ▶ Rectal microbicides ▶ Revalidation in medicine ▶ Antiretrovirals and the kidneys ▶ Antiretrovirals and the heart ▶ Low level detectable viral loads on therapy ▶ Paying young people to take their medicine ▶ Patient-centred outcomes in HIV ▶ Viral latency and eradication strategies ▶ HIV services for the 21st Century: specialist care in a low-cost NHS ▶ Does ageing really matter in HIV?
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
David Rowlands
5. Positiveline London 0800-1696806 Monday to Friday 11am until 10pm & at the weekends 4pm until 10pm www.eddiesurmantrust.org.uk
1. The HIV Support Centre Helpline Belfast 0800 137 437 Monday to Friday 9am-5pm & Monday/ Wednesday 7pm—10pm www.thehivsupportcentre.org.uk 2. Samaritans 08457 90 90 90 in the UK and Northern Ireland 1850 60 90 90 in the Republic of Ireland Every day, 24 hours www.samaritans.org 3. Herts Aid: itext Service Hertfordshire Text questions to 07813 684 294 www.hertsaid.co.uk
6.Lesbian and Gay Switchboard London 0300 330 0630 Daily 10am to 11pm www.llgs.org.uk 7. i-Base HIV Treatment Phoneline 0808 800 6013 Free to call from landlines and mobile phones on the Orange network Mon-Weds, 12 to 4pm www.i-base.info
4. LGF Helpline Manchester 0845 3 30 30 30 10am-10pm (Staffed), 10pm-10am (automated system) www.lgf.org.uk
8. Hepatitis C Trust Helpline 0845 223 4424 calls cost 3.5p per minute Monday to Friday 10.30am to 4.30pm www.hepctrust.org.uk 9. Talk to Frank 0800 77 66 00 Every day, 24 hours www.talktofrank.com 10. NHS Direct 0845 4647 Every day, 24 hours www.nhsdirect.nhs.uk
Ten Top Helplines, recommended by BASELINE Editors.
If you can recommend a local HIV or hepatitis support group email: david@baseline-hiv.co.uk 64
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Summer 2012
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
HIV global figures 2011
34.2 million;
number of people worldwide living with HIV
8 million;
‘I am a scientist.’ ‘I am an advocate.’ ‘I am a woman.’ Francoise Barre-Sinoussi, President of the International AIDS Society in her closing speech at AIDS 2012.
number of people living in low- and middle-income countries receiving HIV treatment
57%;
proportion of HIV positive pregnant women who received HIV treatment to avoid transmitting HIV to their babies
2.5 million; who acquired HIV
330,000;
who acquired HIV
number of people
number of children
1.7 million;
number of people who died from AIDS-related illnesses
US $ 16.8 billion:
total resources available for the response to HIV in low- and middle-income countries
US $8.6
billion total resources available from domestic sources for HIV investment in low- and middle-income countries. Source: UNAIDS
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Summer 2012
Some breaks from the norm are more welcome than others... The side-effects of HIV medication can sometimes interrupt your everyday life and leave you feeling not your usual self. Talk to your doctor today to ensure your HIV treatment is right for you.
Extraordinary efforts for a normal life Š Janssen-Cilag Ltd
UK/HIV/2011/0088
November 2011
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