Pregnancy: To Baby and Beyond Hep C: Where’s the strategy? Thriller Filler: Aquamid Winter 2012
ISSUE 11
www.baseline-hiv.co.uk
In this issue
Welcome to the first issue of BASELINE in 2012. Like many of you, we are expecting a challenging year ahead. Over the past few months we’ve had great fun making a series of short films about healthy eating. Ranging from 8-20 minutes, and introducing you to a host of dietary experts and food lovers, you can watch them at www.baseline-hiv.co.uk In this issue Angelina Namiba from HIV i-base meets a mentor mother from Positively UK to learn how peer support is making all the difference to positive women starting families. Yusef Azad from NAT calls for a coherent strategy to address the growing number of people with HIV, particularly gay men, being newly diagnosed hepatitis C positive. Chris Morgan from Unusual Risks gives sound advice if you are thinking of taking out life assurance. David Rowlands visits Stafford prison with Staffordshire Buddies to learn more about prison life from the jail’s gay and bisexual inmates. Ruth Donnelly and Jens Wilhemsborg report on cosmetic filler Aquamid that’s being used increasingly by people living with HIV with facial and buttock wasting. Former Crusaid Programmes and Partnerships Manager Ian Leckie writes an open letter to the trustees of Terrence Higgins Trust expressing a number of concerns about the management and delivery of the Hardship Fund post the Crusaid merger. Terrence Higgins Trust responds. Finally, Tom Matthews from the National Long-Term Survivors Group provides us with a little measure, reminding us that self-help remains as powerful a tool today as it was in the beginning. If you want to keep in touch with us day-to-day please join our Facebook group BASELINE or follow us on Twitter @BASELINETWEET Robert Fieldhouse Cover image David Rowlands Published by Fieldhouse Consulting Limited
Winter 2012
4 bylines 6 drop-us-a-line 8 code clinic launch 10 headline: uk news 12 headline: global news 14 west end Eurovision 16 THT hardship fund letter 18 THT’s response 20 from pregnancy to baby and beyond 24 thriller filler: aquamid 28 8well healthy eating films 30 alere 32 psychological standards for HIV 34 hotline 37 myline: Tom Matthews 37 partner study update 38 aquamid for facial wasting 41 BASELINE congratulates 42 istay healthy 44 ibase q and a 45 breaking in to prison 48 headine: treatment news 50 do you have life assurance? 52 NAT report on hepatitis coinfection 56 the day I died 60 headline: hepatitis news 62 many faces of HIV 64 dear Susan 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 03
deadlines
for the next issue Copy 20/04/2012 Advertising 27/04/2012 Robert Fieldhouse has been working and Susan Cole is a Policy Officer at NAT. She covolunteering in the HIV sector since 1997.
ordinates NAT’s Activist Network.
Jane Phillips: Tweeting, Facebooking and fiddling Ruth Lowbury is the Chief Executive of 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.
MedFASH and manager of the psychological standards development project.
Yusef Azad is the Director of Policy and Campaigns at NAT (National AIDS Trust).
Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicine. Busily attending medical conferences and scouting for the latest stories.
Tom Matthews set up BP Leeds in the 1980s and is now a trustee of ABplus in Birmingham and the National Long-Term Survivors Group.
David Rowlands has extensive copy writing, Simon Collins is a leading HIV advocate. He photography, design and brand development experience across a range of sectors.
heads up HIV i-base.
Joel Korn is a member of the Support and Gareth Williams splits his time between a Development Worker Team at River House graphic studio and the great outdoors.
Michael Duggan Ph.D has extensive experience in manufacturing, training, and production. Schooled in Chemistry, his interests include developments in HIV medication and the long search for the cure.
Trust. He is a trained counsellor (MBACP individual and group work) and is also a facilitator of Living Well’s Positive SelfManagement Programme.
Jens M. Wilhelmsborg a long-time Danish HIV advocate. Jens is Chair of HIV-Denmark’s
Yusef Azad is the Director of Policy and Medical Committee and has, since 1999, Campaigns at NAT (National AIDS Trust).
Liz Shaw is a Consultant clinical psychologist and chair of the psychological standards working party.
Angelina Namiba is a treatment information worker at HIV i-base.
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. 04 Winter 2012
been actively involved in European AIDS Treatment Group (EATG), where he is Chair of Development, Membership Advisory Group to the Board. 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
Editorial Administrator: Tom Matthews Business Development Manager & Photographer: David Rowlands david@baseline-hiv.co.uk Proof reader: Michael Duggan Designer: Gareth Williams
www.baseline-hiv.co.uk
Talking points A checklist for you and your doctor Talking points is designed to help you talk to your doctor about HIV treatment. Having the right information available to you and your doctor will help you get the best out of HIV treatment, and reduce the chances of problems developing in the future. Not all HIV drugs are suitable for everyone, and some will work better for you than others. By answering the questions you will be able to build up a list of important issues to talk to your doctor about, so that the treatment you receive is right for you.
ďƒœ www.aidsmap.com/talking-points
editor@baseline-hiv.co.uk Dear David and Rob On behalf of BHIVA / Wellcome Trust we would like to thank you very much for supporting our World AIDS day event through providing a film clip documenting the patients’ perspective of HIV/ AIDS at 30: the next 30 years. As you are aware, this clip was utilised as part of the main sessions during the event. As I am sure you are aware, the event was well supported with over 160 delegates attending, representing a full house. Thus far the feedback we have received has been excellent with many encouraging comments. We greatly appreciate your support and recognise that the success of the event could not have been achieved without your invaluable contribution to the programme. We do hope you found the event both interesting and enjoyable. Once again thank you for supporting our event. Kind regards, Andy Rogers Conference and Events Manager
Dear David and Robert How do I start to say thank you for the very generous donation you have given to the Samaritans. This really is very kind. All charities are struggling at present, and Samaritans are no different and as treasurer it really can be a headache. When unexpected gifts arrive I breath a sigh of relief so thank you again. Pat, Treasurer, Worcester Samaritans.
Dear Robert I really enjoyed meeting you at the Midlands Arts Centre following the screening of We were here. Just wanted to say what a good discussion you facilitated afterwards and thanks for the encouraging words about HIV. I am rarely “out” about my status but I think the evening has given me more confidence to live more openly with HIV. Name and address withheld
Dear Robert and David We would like to extend our grateful thanks for your donation of Toys for the Children’s Xmas party, it was very kind of you. It was a great success and we hope to continue doing it for the foreseeable future and we look forward to other projects over the next few months. We would like to take this opportunity to offer our sincere thanks for all of the amazing work you do in supporting ABplus and hope that you will continue to support us in 2012. We would also like to take this opportunity to wish yourselves and your BASELINE readers a Happy New Year. Kind Regards Tina Prashar, Manager, ABplus and KP, volunteer, ABplus
06 Winter 2012
Hi Robert Long-time no see. Was a bit of a shock to bump into you filming in Dalston Market. The healthy eating films sound like fun. Glad things are going well at BASELINE. Barry
Dear Robert Congratulations on being awarded Person of the Week by the Huffington Post. If anyone deserves it, it’s you. Katrina Taylor www.baseline-hiv.co.uk
Innovative sexual health clinic opens for gay men in Soho
CODE, a new sexual health service for men who have sex with men (MSM) into the harder sex scene has opened its doors at 56 Dean Street, Soho (56DS). CODE also offers non-judgmental advice on the sexualized use of recreational drugs – particularly crystal meth (Tina) and GBH/GBL (G). Other clinics are offering help with ‘club drugs,’ the Kobler Clinic, part of the same Chelsea and Westminster NHS Trust, runs one such service. 56 Dean Street says the CODE clinic is a rare partnership between the NHS and the voluntary sector, working with Antidote, London Friend’s LGBT drug and alcohol counselling service. A survey of CODE patients showed that 1/3 have had unprotected anal intercourse. Most men at the CODE clinic had taken Tina, cocaine, G, poppers and mephedrone, 1/3 were injecting 20% had a sexually transmitted infection, which is high compared to other sexual health clinics. According to the CODE Team, the service “is an exciting and controversial new clinic, targeted at gay men who are into harder sex, or perhaps the fetish scene and who may also use drugs during sex. The Tuesday evening clinic offers information, support, sexual health screens, harm reduction advice and referrals of men who may feel uncomfortable or unwilling to discuss drugs (including steroids) and harder sex openly with their sexual health team.” 08 Winter 2012
Why could the CODE approach be seen as controversial? Leigh Chislett, 56 Dean Street’s clinic manager responds, “we are targeting people who have hard sex and use drugs. We are not about changing people’s behaviour, unless they want to change, we don’t say you shouldn’t be doing fisting, if you are, we say, maybe you could do it more safely.”
“I think people are unaware of the scale of needle use out there – two thirds of the men we see have injected.” The linkage between drugs and hard sex has been getting more closely associated on some scenes says David Stuart, Antidote’s Education, Training and Outreach Manager and the use of Tina and G continues to increase in London. In 2004 he says it was rare be asked about these drugs: in 2011 39% of the 700 people Antidote had in treatment reported crystal meth as the primary drug of choice - G was the primary drug for 27% in 2011. Increases in club drug referrals from accident and emergency departments or sexual health clinics have gone from 6% of the case load to 60%. ‘We want to help people re-engage in sober sex, make safer choices when under the influence and negotiate boundaries when hooking up
Chris O’Connor
online. So joining the CODE team seemed a perfect fit from the start. Providing informed answers to questions that other clinics may find challenging is what we are about. At CODE we can offer the sexual and drug information from both teams on site,” says Stuart. The need is pressing with rising rates of HIV and hep C amongst MSM. There seems to be some debate as to the source of the rise in hep C infections in gay men - has there been a change in sexual behaviour? ‘No - I think people are unaware of the scale of needle use out there – two thirds of the men we see have injected. Smoking crystal through a pipe four years ago was the norm – now 80% of men we see are injecting.’ Using condoms and lube say Antidote, is vital because drugs can lead to dehydration and impair the mucous membrane that protects the lining of the anus. ‘Booty bumps’ or putting drugs up your bum can also damage it, making it more prone to infections. Passing out with G is something that has become a normal ‘occupational hazard.’ Being aware what is happening is important, and if HIV negative men have been playing with HIV positive partners post-exposure prophylaxis (PEP) might offer protection against acquiring HIV if it is begun as soon as possible (up to three days) after the exposure took place. Flyers for CODE have been distributed at gay
venues in London, an ad placed on the Recon hook-up site and outreach nights with testing and advice at venues such as the Sweatbox gym and sauna and the G.A.Y club. A home sampling HIV test kit, which gives results by post has been tested with the GAYDAR site; so far four positive diagnoses have been made. In February 2012, 56DS is looking to start a service for the transgendered community. 56 Dean Street has the highest number of newly diagnosed HIV cases of any clinic in the UK with over 300 cases in 2010. On World AIDS Day 2011, Dean Street and the Gay Men’s Interaction (GMI) tested a record 467 people for HIV at G.A.Y. ‘We didn’t think people would go for it in such a public space” says Leigh Chislett, “but the queue ran all the around the club – and four people found out they were positive that night. They can now engage with the appropriate care.’ GMFA booklet on how to cruise more safely: http://www.gmfa.org.uk/londonservices/ booklets-and-postcards/gmfa-booklets CODE: For an appointment text CODE to 07786 202 243. Limited walk-in appointments are available every Tuesday evening – 3rd Floor, 56 Dean Street, SOHO, W1D 6AQ. www.baseline-hiv.co.uk 09
Chris O’Connor
Late Diagnosis will Count Quit Smoking and Get Support Lung cancer in people living with HIV is overwhelmingly due to smoking, with no evidence that an HIV diagnosis or low CD4 count is associated with lung cancer, researchers from the Swiss cohort study reported in the British Journal Of Cancer. With HIV positive people more likely to be smokers than the rest of the population, the consequences of smoking have led to the development of a range of services targeted at supporting people in quitting. Another Swiss study (HIV Medicine, November 2011, Huber B) looked at a smoking cessation course in a Zurich HIV clinic. A half days training course was run for medics at the clinic, and smoking cessation support was integrated into routine clinic appointments. The 1700 Zurich patients were compared to the rest of the Swiss HIV Cohort of 11,000 patients. In 2000 when the study started, 64% of patients in Zurich smoked - this had fallen by 23% in 2010. The investigators said that the Zurich clinic patients were 25% more likely to stop than the other clinics where there was no such programme. In London the gay men’s health charity, GMFA are running stop smoking courses, which they claim gave a success rate of 75% compared to the 50% quitting rate of NHS smoking cessation courses. Gay men have much higher smoking rates than their straight counterparts, say GMFA; 40% of gay men smoke (60% among 25-34 year olds) way above the national average of 22%. Two courses run from GMFA in Old Street for seven weeks, one night a week; starting 21st February and the 1st of March. To book a place call 0207 738 3712 or see www.gmfa.org.uk/stopsmoking 10 Winter 2012
The indicators by which the reformed NHS public health system will be measured, will include the rates of late HIV diagnosis, (defined as a CD4 cell count below 350), say the UK government. Campaigners say the measure is vital to expand HIV testing initiatives and to reduce late HIV diagnosis. “We now need local authorities and the local NHS to respond to this indicator,’ says Deborah Jack of the National Aids Trust, adding, ‘they need to plan and invest to improve testing uptake.’ While the government has moved away from setting targets, 66 ‘indicators’ have been set to be monitored by local authorities, each should contribute to ‘outcomes’ concerning life expectancy and health inequalities. Indicators include, teenage pregnancy rates, completion of TB treatment and deaths from liver disease.
Supermarket Pay Out
An employee of Tesco who claimed unfair dismissal because of his HIV status has been awarded £32,000 in compensation. The young man was employed as a security guard in a Tesco store in Dublin. The supermarket claimed that the man had consumed a bottle of Ribena and a chocolate biscuit without paying. The man claimed an honest mistake, and had no breaches of disciple or complaints during his employment. The employment tribunal also found there had been breaches in the dismissal procedure. During the hearing the man said he thought there was a link between his HIV status - which he had disclosed to a Tesco employee relations officer – and his dismissal. He felt he was being treated differently and punished disproportionately. In the UK people living with HIV are protected under The Equality Act 2010, which incorporates the protections of the Disability Discrimination Act 2005. For more info on employment rights and HIV see: www.nat.org.uk www.baseline-hiv.co.uk
news: global
New ARVs For Kids – But Treatment Gap Persists
Two new formulations of antiretrovirals suitable for children have just been approved, although experts say that the development of appropriate ARVs for children still lags behind that for adults. In January, tenofovir in 150, 200 and 250mg tablets for children aged 6-16 and a powder formulation (ages 2-5) were approved by the US Federal Drug Administration (FDA). The adult standard dose of tenofovir 300mg was on the market in 2001. Raltegravir, the integrase inhibitor treatment for HIV, has just been given FDA approval for doses suitable for children including a banana flavoured chewable version. Raltegravir is effective for HIV positive people who have experienced treatment failure on previous regimes, but is currently priced at $3,000 per year, out of the reach of most children who need it. Apart from ARVs tested specifically for children - the need for second- and third-line treatments is also pressing for children as many appear to be developing resistance to ARV combinations faster than adults. The lack of availability of this option has been described by clinicians as a ‘treatment time-bomb.’ While first line ARVs have dropped in price to under $70 a year with the advent of generics, (UNITAID) and second-line drugs have fallen to around $450 - third-line drugs such as raltegravir can cost up to $3,000 a year. Drugs made after 2005 – such as third-line ARVs are protected from 12 Winter 2012
generic competition because of barriers such the TRIPS trade agreement. A recent study in South Africa published in the Journal of the International AIDS Society (Van Zyl) described the historic use of unboosted protease inhibitors (PI) as being a major factor in high proportions of children having protease inhibitor resistance -14 out of 82 patients had major PI resistance in that study. The authors conclude, ‘Successful third-line therapy of paediatric patients is hindered the lack of children’s formulations (especially younger than six - largely a result of the low priority that is given globally to the paediatric formulations and regimens.’ In the October 2011 issue of The Lancet, the authors said that a developing pattern of antiretroviral resistance is being observed in Sub-Saharan Africa in contrast to lower levels of resistance in high-income countries. There is still no safety and efficacy data for children on the NNRTI etravarine or the CCR5 antagonist maraviroc and limited data for younger children for NNRTI efavirenz (under three), or the protease inhbitors atazanavir and darunavir (no data for under six year olds). Many ARVs, say experts, are unsuitable for poor countries as they can require refrigeration, are bitter tasting and need clean water to mix. According to a report by Medicins Sans Frontieres, these gaps exist despite the FDA and the European Medicines Agency offering incentives.
Chris O’Connor
Test and Treat in BC Claims Success
British Columbia (BC) in Canada is claiming that an aggressive policy on testing and early treatment for HIV, a policy linked to care and expanded antiretroviral therapy (ARV) access - has seen a radical drop in new HIV infections in the province, according to the latest figures for 2010. The statistics show that in 2010 there were 301 new diagnosis compared to around 400 in previous years. In 1996 there were over 700 new HIV cases. One of the main evangelists for widespread testing and early treatment, Dr. Julio Montaner, is a former International AIDS Society president and director of the BC Centre for Excellence in HIV/AIDS, which has made BC the testing ground for this approach. The recent drop was not due to more testing. Although it is not a realistic proposition that treatment on its own could halt the HIV epidemic, Montaner said in a recent interview, ‘I think treatment as prevention can drive the epidemic from a raging epidemic, as we had in BC 20 years ago, to a more controllable situation as we are seeing today. The trend continues downwards, so we still have to see how far down we can push this.’ Montaner said that the BC trend was one he didn’t see elsewhere in Canada, saying that new infections rates were rising or at best stable. ‘The public needs to get incensed,’ he said at the inaction by government. The failure of an institutional and political will to tackle HIV, left clinicians and activists with more work in Canada ‘What is happening here is that there is a compartmentalisation of the epidemic by which it is us and them, and as soon as its ‘them’, we don’t care. That’s unacceptable. Year after year, it’s reported that 25% of people in this country infected with HIV are unaware of their infection, tell me, where is the strategy? Except for BC there is no strategy.’ BC has had a proactive approach and resources to undertake a high profile test and treat campaigns, which seeks out the most at risk and attempts to normalise HIV testing for adults who consent to it. ‘It’s Different Now’ campaign was launched last year http://itsdifferentnow.org
First Baby Born to Positive Woman in Albania
For the first time an HIV positive mother has given birth to a baby through Caesarean section in Albania. The procedure to reduce the transmission of HIV from mother to baby (vertical transmission) was at the New maternity Hospital in Tirana. The baby girl is, say friends of the family who contacted BASELINE, ‘a very beautiful girl, weighing 4 kilos; a thrill and incredible emotion for us all. From the bottom of my heart I wish that this baby be fortunate and for others that will follow.’ The latest official figures for HIV in Albania said that up to November 2011, 65 new cases had been reported for that year, bringing the total to over 500 cases reported. In total 67% of the new cases are defined as AIDS pointing to late diagnosis. The Albanian Association of People Living with HIV/AIDS a non-governmental organisation based in Tirana has campaigned for human rights legislation, particularly in respect of patient confidentiality. www.baseline-hiv.co.uk 13
West End EurovisionDouze Point!
This coming April, TheatreMAD presents West End Eurovision in aid of The Make A Difference Trust. This late night fundraiser pays tribute to the Eurovision Song Contest and sees West End shows competing against each other singing past Eurovision songs, aiming to win the votes of the audience, the competing entries judging panels and the celebrity judging panel. Each participating show will produce a fully costumed performance of a past Eurovision Song Contest song, which has not previously been performed in West End Eurovision.
www.volunteerpositive.org
Are you HIV positive with an HIV negative partner or HIV negative with an HIV positive partner? Join the Partner study to help researchers learn more about the risk of HIV transmission to HIV negative people when their HIV positive partner is on treatment It will also explore why condoms are not used consistently in some partnerships For more information, including a list of participating clinics across Europe see www.partnerstudy.eu or contact Dr Alison Rodger at alison.rodger@ucl.ac.uk
or Simon Collins at
simon.collins@i-base.org.uk
Previous celebrity judges have included: Graham Norton, Cheryl Baker (Bucks Fizz), Sally Ann Triplett (Bardo), Katrina Leskanich (Katrina & The Waves), Arlene Phillips, Frances Ruffelle, Sheridan Smith, Justin Lee Collins, Heart 106.2’s Toby Anstis, and producer, David Ian. The show will also features a special guest appearance by a past original Eurovision Song Contest entrant. Previous performances have included: Scooch, Nicki French, Bardo & The Original Bucks Fizz. Where? Dominion Theatre, 268-269 Tottenham Court Road, London,OVERVEW1T 7AQ on Thursday 26th April 2012 at 11.30pm. Tickets: £20, £35 & £45 (+£1 Restoration Levy). Platinum Package: £100 (+£1 Restoration Levy) (including pre show drinks & canapes, a programme, a top price ticket & access to the After-Show Party at The Penthouse London). Gold Package: £60 (+£1 Restoration Levy) (including a pre-show glass of champagne, a programme & a top price ticket). This year’s, ticket only, after show party, will be held at The Penthouse, London.
5TH
FANTASTIC YEAR
11.30PM THURSDAY 26 APRIL Your favourite West End Shows compete to win singing your favourite Eurovision Songs DOMINION THEATRE Tottenham Court Road | London | W1T 7AQ
BOOK TICKETS NOW FROM ÂŁ20 PHONE 0844 847 2510 ONLINE www.dominiontheatre.com VISIT Dominion Theatre Box Office (No Booking Fee)
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Proudly supported by
An open letter to the trustees of the Terrence Higgins Trust
November 25th 2011 Dear Trustees, I have lived with an HIV diagnosis in the UK since 2002. I am troubled by what has, or more accurately has not, happened with the Hardship Fund at THT, since the charity merged with Crusaid in mid-2010. Prior to that, the Fund was the main form of financial help available from the voluntary sector, targeting positive people who presented with severe HIV-related economic difficulties. I am troubled because in June 2010 (the day after that year’s Walk for Life fundraiser) the merger was much-trumpeted as being the best way forward, to ensure vital services of povertyrelief would be protected for people living with HIV and AIDS in the UK. Some 18 months on, however, there is barely a limp effort at granting only very small tranches of money to people in need. Repeated promises concerning the full re-opening of the Fund have gone unfulfilled. Timelines are regularly moved back; people in need are left wanting; small local support agencies have been overwhelmed by people in need seeking emergency money. Demand is undoubtedly greater than it’s ever been during the fund’s 25 year history, yet the goalposts around re-opening are constantly changed. The latest advice issued is to anticipate a reopening of the Fund sometime in early 2012. Of real concern to anyone interested in 16 Winter 2012
supporting the most vulnerable, should be the response from major funders of the Hardship Fund. For example, what is happening to the monthly five-figure sum that one of the Sainsbury’s family of charities (Monument Trust) has been ploughing into the Fund since summer 2010? Equally, what is the Elton John AIDS Foundation doing about its position? Previously EJAF was the single largest funder of the Hardship Fund over many years. Since the THT/Crusaid merger, they have apparently pledged continued support, only to stall time and again over a protracted period. At the same time, an EJAF-funded THT website has been launched amid a huge fanfare. Purportedly aimed at revolutionising online support for positive people, it has cost an eyewatering seven-figure sum to develop and implement. The third main backer of the Fund, MAC AIDS Fund, seems to be awaiting the next move of the other players, prior to promising any further commitment from its New York office. I am not for a moment suggesting that shortcuts be taken, or anything other than robust systems be in place around monitoring and evaluation of the Fund’s activity. But how long does it take to get a fully-operational fund up and running? How many more delays will there be?
How many more people will be unable to heat their bedsits this winter, while THT continues to invest time and money in promoting a fashionable new website? From fundraising to grant-making there seems to be little in the way of transparency coming out of THT. To the outsider, the organisation seems very “top-down-heavy” in its community engagement and delivery of sexual health services. There seems to be far more emphasis placed on THT’s own image and brand promotion, than on actually getting their frontline, flagship, hardship services delivering tangible help to real people in genuine need. All this adds up to make me question the motives and direction of an increasinglycorporate-styled organisation, with humble beginnings, as it approaches its 30th anniversary. For example, even if the Hardship Fund’s donors are dragging their feet, last June’s Walk for Life event was hailed by organisers as being an incredible success. According to the Walk for Life Website, THT has raised £100,000 in 2011 for the Hardship Fund, through the dedication of individual fundraisers. Half a year later, why is that money not finding its way into the accounts and hands of desperately-poor people living with HIV? Is that total a guess-timate or an actual hard figure?
Either way, the slow response seems shameful. In addition, there are many other donors who support the hardship fund by way of small, regular monthly direct debits, specifically to support the hardship Fund. Where is that money being spent? Or is it just accumulating for THT in an interestbearing account? The amount of money the Fund will be asked to disburse - when it eventually gets back on its feet - of course, demands proper checks and balances. At its height, prior to summer 2010, the Fund would regularly disburse £40,000 a month in individually-assessed, means-tested grants. Currently, it is awarding less than a twentieth of that. But whatever the management strategy and discussions on-going, around the Fund’s future, for a charity that sells itself as being “the leading and largest HIV and sexual health charity in the UK,” I believe we should all expect better. This further delay in helping the very people who the organisation exists to help, hardly instils much trust in the name Terrence Higgins. Get a move on THT! Yours faithfully, Ian Leckie www.baseline-hiv.co.uk 17
Terrence Higgins Trust’s response
21st December 2011 Dear Ian, Thank you for your email of 25th November to THT’s trustees. I am replying on behalf of the Board. I was sorry to hear your concerns about the operation of the Hardship Fund which transferred to THT last year after we stepped in to rescue it when Crusaid closed. I have investigated the points which you raise, and I will consider each of these in turn. Firstly you raise concerns about the time which it has taken to expand the size of the Fund since it transferred to THT. As you will know from your time when you worked with the Fund prior to and following the transfer from Crusaid to THT, at the point at which THT took on responsibility for the fund, it had made no payments for a number of months. The first step which THT took was to get the fund reopened, and this occurred in August 2010 within two months of the transfer from Crusaid taking place in June 2010. This meant that the Fund was able to reopen quickly and therefore, once again, meet the needs of those people with HIV in absolute greatest need. Since August 2010 we have been working closely with three major charitable funders, to put in place a longer term funding agreement for the Hardship Fund. This has required a lot of work to both redesign the way in which the fund operates 18 Winter 2012
so that a larger amount of every pound given to the Fund can go directly to people living with HIV. It has also required decisions to be made by the three different organisations, alongside THT, and this has taken longer than we had originally envisaged. However, the final one of these Funders confirmed their funding decision in November 2011, and the expanded Hardship Fund will now open in January 2012. This will mean that the Fund will be able to support over 2000 people a year, and operate through 50 referral points in the UK, as well as via THT Direct. As a result of this work we now have a Fund which is based on solid foundations and which will be sustainable into the future. Secondly, you raise concerns about the number of people supported by the Hardship Fund since responsibility for the Fund transferred to THT. During its first year of operation following transfer from Crusaid, the fund has supported 1000 people and has made payments worth over £100,000. We don’t however believe this is sufficient to meet the range of Hardship Fund needs, and therefore are pleased that we will be able to increase the level of grant making from January 2012 onwards, reflecting the increased funding which is now
available for the service. Thirdly, you raise concerns about THT’s work in tackling increasing levels of poverty over the past 18 months. I fully recognise that the need for Hardship Fund support has certainly increased over this time, and I am therefore pleased that we are now able to expand the Hardship Fund. However alongside this, THT has been providing high levels of welfare rights advice and support to people living with HIV to enable them to maintain, and where possible, increase their benefit income. As you may know, THT’s outcomes for its Welfare Rights services are good, with for example, in London, achievement of an average of over £30 increase in weekly income for people using our advice services. Fourthly, you raise concerns about the use of THT’s voluntary income for the Hardship Fund. As you will know, from the outset of the transfer from Crusaid to THT, we have been committed to ensuring that every pound raised by THT for the Hardship Fund is spent on supporting the Fund. This remains the case and we can demonstrate this has occurred. Finally, you raise concerns about THT’s broader approach to its work. I should like to assure you
that we are working hard to support people with HIV and also prevent the spread of HIV. In the last 12 months we have supported more people than ever before, even though, in common with many other charities, we have experienced big cuts in statutory income. We have also worked hard to ensure that our HIV policy and advocacy work has been strengthened so as to be able to do all we can to defend the rights and wellbeing of people living with HIV. I do share your frustrations that it has taken longer than we would have liked to expand the Hardship Fund, however I should like to assure you of our committment to continuing to do all we can to support people with HIV in poverty. Yours sincerely, Nick Hulme Chair, Board of Trustees Terrence Higgins Trust 314-320 Gray’s Inn Road London WC1X 8DP Tel: 020 7812 1600 Fax: 020 7812 1601 Email: info@tht.org.uk www.tht.org.uk THT Direct: 0808 802 1221 The HIV and sexual health charity for life 19
From Pregnancy to Baby and Beyond Angelina Namiba meets a Positively UK Mentor Mother In the context of the sexual health and reproductive rights of women living with HIV, we need to have unconditional access to three basic but fundamental rights; Safer sexual pleasure Access to good quality healthcare including contraception advice and well woman clinics And the ability to choose with whom and whether or not we have sex. On top of this the ability to choose whether to have children or continue a pregnancy after an HIV diagnosis is absolutely vital. A woman choosing to continue with a pregnancy after an HIV diagnosis has a myriad of issues to deal with. She has to deal with coping with her diagnosis; worrying about whether she will carry the baby to full term; whether the baby will be born HIV positive; starting treatment if she is not already on it; whether she will experience medication side effects? What is the treatment going to do to the baby; what mode of delivery is she going to have; will she be able to breast feed? Add disclosure to her partner, family and friends, and you have a potential recipe for depression! The Project From Pregnancy to Baby and Beyond was set up by Positively UK to provide a comprehensive package of targeted information, emotional and practical support to women dealing with exactly these issues. Even when a woman receives the best clinical care, there is no equating the excellent value that HIV positive peers can offer to the pregnant women. There are specific guidelines for women and recommended treatments. Please discuss this with your clinician. Positively UK trained women living with HIV
. . . .
20 Winter 2012
who had either been diagnosed ante-natally; or women who have had their babies following their HIV diagnosis, to offer comprehensive support to their peers. The mentor mothers were trained in two key areas. Their role as volunteers; setting smart goals and general administration of the 1-2-1 and group support sessions. They also underwent comprehensive training in a second area, which was called, the pregnancy journey.
‘When both partners are HIV positive or even in a serodifferent relationship, the options now include timed unprotected intercourse.’ The pregnancy journey training covered 4 key components; Preconception – issues that HIV positive women need to look at and address before planning a pregnancy. What options are available for conception for different types of couples? For instance the importance of being aware that when both partners are HIV positive or even in a sero-different relationship, that the options now include timed unprotected intercourse at a time when the woman is most fertile. This as well as understanding the importance of the role of preconception pre and post-exposure prophylaxis in the light of the Swiss statement http://i-base.info/guides/pregnancy/swissstatement which stated that if the positive partner has an undetectable viral load for at least 6 months; is excellent at adherence and has no other sexually transmitted infections, their the risk of transmitting HIV to the negative partner was very
Angelina Namiba
low, and as such now offers greater conception possibility and choice for positive people planning a family. Pregnancy – what happens during pregnancy and which interventions you should expect? It was critical to communicate the importance of adhering to treatment to maintain an undetectable viral load during pregnancy and at the time of delivery, as this is key in reducing transmission to the baby. Delivery – which delivery options are available? What information do women need to make the right choices? Which interventions should a woman avoid during delivery? An important element of this part of the training was to ensure that the mentor mothers were up-todate with the delivery options now available for women living with HIV. Some of us had had our babies in the late 1990s when the recommended option was Caesarean section, but vaginal delivery is now very much a possibility, especially with the introduction of effective treatments for HIV (HAART). HAART has the potential of reducing the viral load to undetectable levels making it safe for women to have vaginal deliveries. Aftercare – for mother and baby, formula feeding, tests for baby, general care of baby, contraception and continuing to engage with healthcare services even after delivery. Advances in testing for the baby mean that women can have peace mind sooner in terms of knowing the babies status earlier than it used to be. The baby is tested using test called HIV PCR DNA. A test is done at day 1, 6 weeks and when baby is 3 months old. A test at 3 months will pretty much confirm the baby’s HIV status, however, because babies are born www.baseline-hiv.co.uk 21
with their mother’s antibodies and because these gradually disappear – sometimes taking as long as 18 months, in the UK, it is recommended that a confirmatory final test be done for the baby when it is 18 months old. The training also included tips and strategies to explain why a woman was not breastfeeding or why she had a Caesarean section. It was important that the mentor mothers were able to support women throughout the journey as often times a great deal is put into place in order to ensure a woman has a healthy negative baby. But once this has happened, the woman is then left to her own devices, which is when, ironically many need intensive support. With the right training, mentor mothers are able to provide their time, their expertise and their lived experiences, to their peers. Nina told BASELINE about her experience of being a mentor mother; “My experience of being a mentor mother has been very fulfilling from not knowing what the person I was mentoring would be like, to getting to know them and contributing positively to their life. Most of the mothers or pregnant women I have mentored came from different walks of lives, some newly diagnosed and pregnant for the first time, some who had children previously, some were thinking about having children. “The life experiences of these women were quite diverse and some were very complex cases in which they needed intense support and some were just straight forward support, for example, one of the complex cases I had was an asylumseeking woman, newly diagnosed, partner disappeared, destitute with no fixed abode. When I met her for the first time she said the “nurse told me you will help me please aunty”. I felt like “oh my goodness she has so much expectation from me, will I be able to deliver?” “I introduced myself to her and told her a little bit about my background. I mentioned to her that I had been living with HIV for 14 years and that I had 22 Winter 2012
an 11 year-old son. I explained that I was there to support her and answer any questions that she had about pregnancy and HIV treatment, according to the referral she was not adhering to treatment, so I explained to her why it was important for her to keep taking her treatment, her CD4 count was very low as well, she had a high viral load and had been diagnosed a bit late in pregnancy. I realised the case would need quite an intense intervention. I felt like I had to do this I reflected on the time I was newly diagnosed, and when I was pregnant with my boy, I had no one to actually sit in with me and tell me things that will make me feel better, I did what the doctors told me, however, there was a lady who had just had a baby when I was pregnant she did not directly talk to me but, I looked at her as an example I thought if she made it I can make it too. “When I do something I do it whole heartedly and my weakness is that I really want everything I do to be perfect so I felt I’ll do everything in my capacity to support her. Firstly she was shocked that I had lived with HIV for 14 years and looked so healthy, have an 11 year old child, and most importantly that I went back to study for a social work degree, which she mentioned to me that it what she wants to do, to be a social worker. I then made several referrals for her church pastor, took in financial help, food and nutrition, one-to-one support, immigration advice for her. She was so grateful. “She now has a one-month-old baby boy and she is adhering to treatment, I have referred her to support groups for peer support and she is now very confident and always thankful that she met me. This is how fulfilled I am being a mentor mother.” For referrals to the project, please contact the Casework Team at Positively UK on 0201 713 0444. This article was funded by Abbott with no editorial control or input.
8 short films about eating well with HIV - Healthy eating for babies, Available at
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toddlers and kids with HIV Dietary basics with Clare Stradling, HIV dietitian A trip to the market on £35 What is the portfolio diet? Meet Megan Morrison, chef extraordinaire The Food Chain’s Services, London Healthy Living Advice, 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.
Thriller Filler:
Aquamid for buttock building
A positive test result for HIV can be devastating, but since the 1990s drugs have been available in the UK to enable people living with HIV to live relatively normal lives. Unfortunately some of the drugs can have one very visible side effect that can render it difficult to keep your condition a secret. This year there will be an estimated 100,000 people living with HIV in the UK; one in four do not know they are HIV positive. With cuts to HIV prevention, many are predicting we will see a sharp rise in new infections in the coming years. Thanks to a big AIDS awareness push in the ‘80s and 90s, these days the majority of us who lived through those times are aware of the risks and practise safer sex, at least when we first meet a new partner. But be honest – how many of us have demanded that said partner takes an HIV test before, six months into a relationship, we decide to leave the condoms out of the equation? With numbers on the rise, it is something to be thankful for that today’s medications mean HIV is a condition you can live with. It might not be something you would want to live with, but if the worst happens you can get the drugs that will help you to continue to live a comparatively ‘normal’ life. So far, so good. But there’s a stigma attached to HIV that just won’t go away, and even if you’ve managed to come to terms with it yourself and are getting on with your life, you probably don’t want your condition to be visible to the casual observer. And there’s the catch. Some of the drugs used to treat HIV – although brilliant in many ways – do have one unfortunate 24 Winter 2012
side effect: they block the chemical messaging system to the fat cells in the body, preventing them from absorbing fat and causing that gaunt look that can sometimes be associated with being HIV positive. This condition – known as lipoatrophy, or fat loss for the less technically minded – means that it can be very difficult to hide your illness from onlookers, and whilst no one would recommend that you try to cope with something as life-changing as an HIV diagnosis on your own, a degree of privacy is desirable. Blogger Mark King from The Bilerico Project, www.bilerico.com, has been an outspoken advocate for people living with HIV since testing positive in 1985, explains his feelings on the matter: “When I choose to disclose, privately or publicly, it’s on my terms. I choose how and when to tell you. I want you to know. Facial wasting takes that choice away. “It’s as if the disease is intruding, is taking the upper hand somehow, and worse, taking away my decision about when and to whom I disclose my status. And as much as I want to claim ‘Most Out Poz Guy Ever,’ I don’t like wearing HIV across my face.” Mr Christopher Inglefield, surgical director of The London Bridge Plastic Surgery www.lbps.co.uk has seen a sharp rise in the number of patients – particularly men – seeking treatment for lipoatrophy in the last three years. “Lipoatrophy tends to be particularly noticeable in those parts of the body where you
Ruth Donnelly
would normally expect to see significant fat deposits, such as the face and the buttocks,” he explains. “I think male patients in particular can be very self-conscious about this, and an area where we have seen tremendous growth in the past few years is in male buttock enhancement.” The buttocks are a notoriously difficult area of the body to treat surgically, for the obvious reasons recuperation can be very trying – short of lying on your stomach for six weeks, it’s pretty hard to give the implants time to heal properly, and so the complication rate from buttock implant surgery ranges from 20 to 30 per cent. Compare that to breast augmentation – a relatively similar procedure in terms of the actual operation – which has an average complication rate of less than five per cent, and buttock implant surgery begins to look like a fairly unattractive option. It’s also worth bearing in mind that by definition, people living with HIV are in an immunocompromised state, so any procedure with a high rate of complications represents a serious risk. “In healthy patients, an ideal procedure for buttock augmentation is fat transfer, where we take fat from one area of the body and re-inject it into the area which is lacking in volume,” says Mr Inglefield. “However, again HIV patients represent a deviation from the norm here, as there is often very little fat to harvest from other areas.” I asked Mr Inglefield about the availability of treatment on the NHS. “You can receive treatment for facial lipoatrophy on the NHS, through HIV www.baseline-hiv.co.uk 25
clinics,” he commented, “and I believe it was briefly possible to get treatment for the body using a product called Macrolane, but funding for that has now been cut.” Macrolane is an injectable body filler, used primarily in the aesthetics industry for body contouring procedures, such as minor breast augmentation. Mr Inglefield started using it to augment the buttocks of male lipoatrophy patients three or four years ago. “It was very popular for a while and we were getting good results, but the problem with Macrolane is that the benefits only last for nine to twelve months and then it needs topping up, which can get very expensive and is not ideal in terms of the aesthetic outcome.” So he started to look around for alternative treatments to offer the increasing number of lipoatrophy patients who were coming to him for advice. “I came across a product called Aquamid www.aquamid.co.uk, which is a long term filler that works almost like an injectable implant – once you’ve put it in the body, it stays there for at least four or five years.” There has long been debate within the aesthetics industry about the use of longer term fillers – previous products to have hit the market have disappeared again a few months later due to complications and bad press – so Mr Inglefield knew it was imperative to do his homework before offering this option to his patients. An Italian plastic surgeon, Professor Giorgio de Santis, www.policlinico.mo.it/reparti/ chirurgiaplastica.asp had been studying the effects of Aquamid for the use in treatment of facial lipoatrophy over a four year period, and it was his findings that really sparked Mr Inglefield’s interest. “As far as I’m aware there’s only one other 26 Winter 2012
person in the UK using Aquamid for body contouring, but I was inspired to try it by looking at the published clinical evidence on its safety and long term stability. And looking at Professor de Santis’ findings I could see that it was working very well in facial lipoatrophy, in which case it suddenly becomes a very useful option for my patients.” Aquamid is an injectable product, made from 97.5 per cent water and 2.5 per cent polyacrylamide. Unlike hyaluronic acid based fillers, such as Macrolane, Aquamid doesn’t get broken down by the body over time, but instead begins to bio-integrate, so that blood vessels and collagen actually grow into the injected product. “Because of this bio-integration process, you can achieve the longevity of results that you would get from an implant, but without the risk of complications like capsular contracture – where the body forms a tight scar around the implant, making it harden and giving it a distorted appearance”, says Mr Inglefield. In facial lipoatrophy treatment, a major advantage of Aquamid is that it ages with you. Facial implants might remain in position while the rest of your face sags around it, giving a very odd appearance, but because Aquamid has ‘grown into’ your face, it will begin to droop along with the rest of your facial tissue, so you age naturally. After a year and a half of using Aquamid for buttock augmentation, Mr Inglefield has a very high rate of patient satisfaction and is finding that enquiries about the product are increasing as word spreads amongst the HIV community. No one is going to pretend that a product to improve buttock appearance is a life saver, but what it might just do is make some lives compromised by HIV that little bit more bearable. www.baseline-hiv.co.uk
s edit r c PD 18 C
ANNOUNCEMENT 18th Annual Conference of the British HIV Association [BHIVA] 18–20 April 2012 The International Convention Centre · Birmingham Introduction BHIVA is delighted to announce its 18th Annual Conference, which will be held at The International Convention Centre, located in the heart of Birmingham city centre. Dr Sat Das 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: Top ten papers 2011/12 Management of mental health issues in HIV Prisoners and HIV HIV and drug users Discordant responders: what have we learnt? Can antiretrovirals fully restore health? The virtual clinic: memory loss · MDRTB · cancer Poverty and exclusion: the impact on HIV outcomes The role of the HIV physician in HIV/hepatitis co-infection New targets for HIV replication Spoilt for choice? switching antiretrovirals Clinico-pathological case presentations Difficult pharmacology case presentations What can your CLRN do for you? Managing on-going high-risk behaviour in MSM Antiretrovirals: when to start
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
Maro NcNab, Waverly Care Scotland Marti van der Linde, Birmingham Heartlands HIV Service
Angelina Namiba Martha Baillie, Waverley Care Scotland
Damon Nicholls, The Food Chain
Meet the team behind 8well, BASELINE’s short films about healthy eating BASELINE has recently produced a series of short films on healthy eating if you are living with HIV. We were lucky to get an opportunity to speak with some of the country’s top HIV dietitians. Somewhat reassuringly they told us that being HIV positive does not mean you have to adopt a diet different to anyone else, but we did pick up some really useful tips about using food to counter side effects such as nausea and diarrhoea and 28 Winter 2012
learnt about the blood fat busting potential of the portfolio diet, which can sink lipids as much as a statin. “Food needs to be fun” was the resounding message we got from superchef Megan Morrison, while Waverley Care’s Maro McNabb got us thinking about our emotional response to food. Megan introduced us to quinoa and bulgar wheat as a healthy alternative to rice or potatoes
Robert Fieldhouse
Eunice Sinyemu Silvia Petretti, Positively UK
Megan Morrison
Clare Stradling, Birmingham Heartlands HIV Service
Memory Sachikonye
and taught us to try to eat breakfast like a king, lunch like a prince and dinner like a pauper. We challenged Memory Sachikonye and Eunice Sinyemu to shop to a £35 budget and they did exactly that in London’s Dalston Market, where they taught us lots about traditional African foods. Positively UK’s Silvia Petretti and Angelina Namiba created their own Come dine with me with an HIV twist and Marti van der Linde helped
us learn about nutrition for kids with HIV. A big thank you to everyone who took part and to ViiV Healthcare for funding the project. We hope you enjoy the films. To watch the films visit our website www.baseline-hiv.co.uk www.baseline-hiv.co.uk 29
Robert Fieldhouse
On the spot CD4 counts improve HIV monitoring
The key starting point for monitoring the severity of HIV is to count the CD4 immune cells that the virus attacks. Whether you are newly diagnosed or already undergoing treatment, the CD4 count is a crucial indicator for initiating or changing antiretroviral therapy (ART) and is therefore one of the regular tests that doctors will perform at every routine check up. Until now, the CD4 count has always needed laboratory facilities, meaning that the blood is sent away for testing and you need to re-visit the doctor at a later appointment to discuss the results. However, a new analyser from Alere is set to radically change this approach by enabling doctors to perform the count while you wait. The Alere PIMA™ CD4 analyser has already undergone extensive trials in large HIV centres in the UK and researchers from London’s Mortimer Market Centre at University College Hospital presented their very positive initial findings at last summer’s International AIDS Society Conference in Rome. Dr. Paul Benn reported, “Pima CD4 provides an immediate result and is highly correlated with the laboratory CD4 testing in our setting. It correctly identifies the majority of patients requiring ART and was highly acceptable among those tested. Pima CD4 may facilitate service delivery in a variety of patient-centred settings/ times and offers rapid assessment of the newly diagnosed HIV positive patient”. Details of the full evaluation will be reported in the next issue of BASELINE. 30 Winter 2012
Evaluations are well under way at other leading HIV units including Chelsea and Westminster Hospital, Cumberland Royal Infirmary in Carlisle and St Helen’s Hospital. Around the world the new analyser is already generating enormous interest and in November 2011 the World Health Organisation announced that it had ‘prequalified’ Pima CD4 for immediate use, recognising the significant public health impact that it can have in providing rapid, accurate CD4 counts to those most affected by the HIV/AIDS epidemic. Underlining its own commitment to accelerating access to HIV testing and treatment on a global scale, Alere also announced a partnership with the global health organisation, Population Services International (PSI), to donate up to 1 million HIV tests. As part of its ‘Make (+) More Positive’ campaign, designed to promote HIV awareness and optimism to those impacted by the virus, Alere will donate one HIV rapid test to PSI for every ‘Like’ on Facebook, ‘follower’ on Twitter, or piece of artwork submitted to the campaign’s social media websites – www.morepositive.com, Facebook.com/MorePositive, @more_positive, with a goal of donating up to one million tests, so sign up today and make a difference. This article was supported by Alere: Visit: www.alere.co.uk www.baseline-hiv.co.uk
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
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Standards for psychological support for adults living with HIV Published last November by the British Psychological Society (BPS), the British HIV Association (BHIVA), and the Medical Foundation for AIDS & Sexual Health (MedFASH), the standards for psychological support for adults living with HIV are the first of their kind in the UK. They aim to help ensure access to consistent and high quality psychological support across the country for all adults who live with HIV.
‘It is worthwhile becoming familiar with these standards as they represent the psychological support that all users of HIV services should expect to receive’. The level of support that should be provided for people living with HIV varies according to their needs. The new standards describe the psychological support that should be provided at different levels of complexity by a wide range of professional groups, peers and informal providers, in clinical settings and in the community. The journey in developing the standards began in December 2009 when the National AIDS Trust, an HIV charity that aims to influence policy on HIV care, undertook a project looking into the issues associated with psychological support provision in HIV services in the UK. This was in response to a number of HIV care providers reporting cuts to their services and also because there is considerable psychological need amongst people living with HIV that is being met inconsistently and at times inadequately. NAT held three HIV positive focus groups in partnership with other HIV charities - Positively UK, George House Trust and GMFA - in order to find out about service users’ needs and experience 32
Winter 2012
of psychological support services. The findings informed the planning of a seminar for experts in February 2010. The seminar posed the question: “What psychological support should people living with HIV receive from locally commissioned health and social care services?” Sixty people attended, including clinical psychologists from the BPS such as Dr. Barbara Hedge, the then Chair of the Faculty for HIV and Sexual Health, who presented on provision of psychological support for people living with HIV, and Professor Lorraine Sherr who presented scientific studies on the prevalence and range of psychological problems for HIV positive individuals. Other presentations came from patient representative Chris Sandford, Jo Robinson and Selina Corkery from NAM, Flick Thorley a clinical nurse specialist in HIV and Mental Health and Dr Mike Youle, Director of Clinical Research at the Royal Free Hospital. The presentations led to discussions and recommendations collated in a report that came out in July 2010. It can be downloaded from: www.nat.org.uk The 16 recommendations included: 1. That relevant professional bodies in particular the BPS and British HIV Association (BHIVA), should collaborate to draft and publish standards on psychological support services for people living with HIV involving broader stakeholders. 2. That services should be commissioned on the basis of these standards and should include clarity on how needs are assessed, and outcomes measured. 3. That relevant professional bodies such as BHIVA and MedFASH should include or improve
Liz Shaw and Ruth Lowbury
the relevant content on psychological support when updating existing standards for HIV clinical care and management. 4. That BHIVA and BPS should advocate for more UK research into psychological need amongst people living with HIV and what interventions prove effective in meeting this need. 5. That the BPS and BHIVA should develop tools, or disseminate pre-existing tools, for healthcare professionals in HIV clinics to assist them in assessing whether an HIV patient is in need of some form of psychological support. 6. Increased levels of psychological assessment and treatment should be available for patients at certain points, for example, when starting treatment, or when going through the immigration system. In response to this the BPS, BHIVA and MedFASH have led in developing standards of psychological support, defined as: “any form of support which is aimed at helping people living with HIV to enhance their mental health and their cognitive, emotional and behavioural wellbeing�. This therefore covers a range of services that provide such support, such as: counselling, clinical psychology services and community or peer support services in the UK. The development of the standards was undertaken in partnership through a working party representing other key stakeholders such as GPs, psychiatrists, counsellors, health advisers, and commissioners, as well as voluntary sector provider organisations and people living with HIV. This group produced a stepped care model for assessing and responding to varying levels of need for psychological support and a set of standards that will be helpful to commissioners and managers of HIV services in planning
psychological support for people living with HIV. The standards have been endorsed by the leading relevant professional bodies and should hold sway with providers and planners of HIV services as a result. They cover eight areas with attached auditable indicators to help measure whether they are being met:
. . . . .. . .
The promotion of mental health and psychological wellbeing. Comprehensive psychological support services. Engagement of people living with HIV. Support at the time of diagnosis. Identifying psychological support needs. Competence to provide psychological support. Coordination of psychological support. Evidence based practice.
It is worthwhile users of services becoming familiar with these standards as they represent the psychological support that all users of HIV services should expect to receive. This is important because psychological difficulties have often been underestimated by healthcare practitioners, and it is possible that many people living with HIV have not been offered access to the services they need. People living with HIV experience higher than average levels of emotional distress, such as double the rates of depression. This can affect their quality of life, adherence to medication, disease progression, and how they cope with having HIV. Psychological support can improve these outcomes, as well as helping reduce the risk of HIV transmission, with the added benefit of saving costs to the NHS. Copies of the standards can be downloaded from: www.medfash.org.uk www.baseline-hiv.co.uk 33
Positive East and The London Gay Men’s Chorus present Positive Sounds Come along to the Courtyard Theatre on Sunday 4th March to see Europe’s largest and best known gay choir (LGMC) team up with good friend Champagne Charlie to put on a one-off show called Positive Sounds. Funds raised from ticket sales will support Positive East’s HIV testing service. LGMC’s chairman, Alisdair Low, said: “A sold-out Courtyard Theatre will ensure we raise sufficient funds for Positive East to test 200 people, and follow this up with appropriate support to stay safe.” Tickets available at positiveeast.ticketsource.co.uk or call Mark Butcher on 0207 791 9353.
Fancy running 10K for NAM and raising vital funds? NAM has 5 places on offer in the 10K London Run on July 8th this year. NAM asks you to raise a minimum of £250 in sponsorship. If you have any questions about the form or the event call 020 7840 0051 or email info@nam.org.uk 34 Winter 2012
Get your voice heard NAT is looking for people to join its activist network and strengthen its campaigning work. “It’s a doddle,” says Susan Cole, who co-ordinates the network. NAT write template letters that you can send under your name to fight issues such as benefit cuts. For more info contact susan.cole@nat.org.uk
Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk Robert Fieldhouse
Thames Valley Positive Support (TVPS) has launched a year long campaign called ‘Stigma Sucks!’ ‘Stigma sucks!’ encourages respect, understanding and advances social change within communities. Members of the public will be asked to sign a pledge card showing their support to stop the stigma that surrounds HIV at every event TVPS attends throughout the year. events. The 3 main aims of this project are: • To encourage the public to view HIV as they would any other life long, incurable, illness. • To enable people to learn more about HIV without them feeling targeted. • To demonstrate to TVPS service users that they have the support of their local community. It’s an easy, innovative yet effective approach to stigma, that could have a huge impact on a shoe-string budget. www.tvps.org.uk A coalition of US HIV advocacy groups are calling on all people with HIV to take 10 minutes to complete a survey they hope will help speed the pace of the HIV cure. The survey is designed to measure the willingness of people with HIV to participate in research. The results of the survey will be made public before the launch of the 2012 International AIDS Conference that will take place in July in Washington, DC. To complete it go to www.surveymonkey.com/s/V26FVKZ
30 Faces of HIV Photographer Edo Zollo http://edlondonphotography.co.uk is looking for people to feature in a photographic exhibition later this year entitled 30 Faces of HIV. Edo is looking for people to be photographed in their familiar environment and he’d ideally like to take the pic in a place that has a strong emotional connection with your status. For more information see: http://hivpoz.tumblr.com or contact Edo on 07861 655152. www.baseline-hiv.co.uk
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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 Malet Suite, 2nd Floor, University of London Union, Malet Street, London WC1E 7HY
Date Thursday 15th March 2012 Time from 7pm – 9pm No registration required but please e-mail zoe@nam.org.uk to confirm attendance
updated 2011
www.justri.org
brought to you by:
Brought to you by JUSTRI see justri.org for our other projects
sponsored by:
www.justri.org
in collaboration with:
Confidential Support & Advice Barnsley’s 1st local support group, supporting people living with HIV in our Borough
Take Part in the Partner Study Co-ordinated by the Copenhagen HIV Programme at the University of Copenhagen, the Partner study aims to recruit 1650 couples with different HIV statuses (one HIV positive and one HIV negative) and follow them for 2 years to see what impact the HIV positive partner taking HIV treatment has on reducing the chance of HIV transmission. The study is being carried out in 14 countries, with 23 sites currently signed up in the UK. To take part you need to have had unprotected sex with your partner in the past month. So far 500 pairs have been recruited so there’s still a fair way to go to get the numbers needed to help researchers understand if fully suppressive HIV treatment reduces the likelihood of HIV transmission from a positive to a negative partner. Two out of three pairs currently recruited are heterosexual. Study co-ordinator Tina Bruun told BASELINE that more gay couples are needed; “it’s vital we get more data on anal sex. The World Health Organisation and the US National Institutes of Health are saying pretty much the same thing. We hope to have a 60/40 straight/gay split by the time we finish recruitment.” Recruitment to the study is going well in Spain, Switzerland and Austria, but somewhat lagging behind in the UK. Everyone who takes part is encouraged to use condoms during the study, and the HIV negative partner will be offered a rapid HIV test every six months. The study is likely to run until 2014. To see a list of the UK study sites visit www.chip.dk/PARTNER/ParticipatingSites/UK/ tabid/465/Default.aspx For more info contact Dr. Alison Rodger at London’s Royal Free Hospital Alison.rodger@ucl.ac.uk or Tina Bruun at the University of Copenhagen, tbr@cphiv.dk
Confidential Support & Advice
For further information contact
me
Barnsley’s 1st local support group, supporting people living with HIV in our Borough positive about change
www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710
For further information contact
me positive about change
www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710
Jens M. Wilhelmsborg
Treating facial lipoatrophy
Improving quality of life for people living with HIV using Aquamid
Highly active anti-retroviral therapy (HAART) is today an effective tool in the treatment of people living with HIV, but a major disadvantage of some of the drugs used to treat HIV (particularly the older ones AZT and d4T) can be body shape changes leading to peripheral wasting, central fat gain and, most worryingly, facial lipoatrophy or fat loss. There is a partial or complete loss of subcutaneous fat, mainly in the cheeks, temples and around the eyes, and the face changes, in some cases so radically causing some people living with HIV to develop severe psychological and social problems. The most stigmatising of all of lipodystrophy’s manifestations has to be facial lipoatrophy. In many cases, the physical appearance of people living with HIV affected by facial lipoatrophy although not medically serious in itself can have a destructive effect on self-image and confidence, with general and debilitating roll-on psychological and social effects. Not least, fears of the tell tale stigma of facial lipoatrophy can cause people with HIV to avoid or postpone vital HAART treatment. Sometimes surgical solution (lipofilling) or resorbable fillers have already been attempted in people with HIV with unsatisfactory results; hence there is a need for lasting solutions. Aquamid® reconstruction is a fully tested, easy to administer and safe polyacrylamide hydrogel. lt has already shown its value in other reconstruction indications and is now also available for the treatment of facial lipoatrophy in people living with HIV. 38 Winter 2012
Aquamid® reconstruction hydrogel is the ideal and long-lasting solution for people living with HIV affected by facial lipoatrophy. With the highest water content of any injectable implant at 97.5%, its unique, tailored molecular structure enables water exchange with surrounding tissue without losing shape or effect.
‘Aquamid® is now also available for the treatment of facial lipoatrophy in people living with HIV.’ A non-resorbable, migration resistant hydrogel, Aquamid® reconstruction is non-allergenic and due to its unique molecular structure does not induce hard tissue fibrosis (lumps under the skin). Through its interaction with surrounding tissue, Aquamid® reconstruction does not give rise to pronounced granulomatous reactions, and in the rare event of an infection, this can easily be treated with quinoline antibiotics. A biocompatible injectable hydrogeI that is easy and safe to administer. Aquamid® reconstruction procedures require no hospitalisation or general anaesthetics. They are carried out as an almost painless out patient procedure with a 27G needle and requires almost no recovery time and is immediate in effect and is stable. Treatment improves the quality of life of people living with HIV by removing the sunken cheeks that can make some people appear exhausted and unhealthy, in doing so it restores their self-image and confidence.
Myline: Tom Matthews I remember when... There were only two cities in England where people living with HIV could meet. There was no statutory funding for HIV. Peer support groups began springing up throughout the United Kingdom.
‘The concept of self-help is as valid today as it was at the start.’
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.
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 Scottish Charity No. SC036500
Then came statutory funding and at last some of those voluntary sector HIV services had parity with the services that were being established within the NHS and local government. Then came the withdrawal of the ring fenced HIV Health Funds and the same thing happened to the local government’s AIDS Support Grant. I always wondered why as the payers of both national taxes and local community charges, it was only possible to meet our needs through the provision of “special funds” ? With the infamous “credit crunch” everyone suddenly started to face some of those realities that we had grown used to living with. I have, and will always continue to argue, that people living with HIV should receive the same quality of services as every other citizen and I think we need to return to the “old” days when our commitment and enthusiasm was continually under pressure. Those days when we literally had to fight for everything we received. I also believe we should once again remember why we so veraciously refused to be labelled victims; the concept of self-help is as valid today as it was at the start. This should remind us that there are certain things that we can provide for ourselves, in a much more effective way than any paid worker – support, understanding and the ability to empower each other. Let’s remember where we started and learn from our experience. We have a history, of which we should be proud. Maybe the future need not be as bleak as some would have us believe?
@PositivelyUK
SolutionS
EnablE
HopE
SUPPORTING THE POSITIVE COMMUNITY FOR OVER 18 YEARS
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 info@positivelyuk.org 020 7713 0444
www.staffordshirebuddies.co.uk
www.positivelyuk.org
• Advocacy • Support Services • Complementary Therapy • Advice • Welfare & Benefit Support • Employment & Training Support
www.freshwinds.org.uk
0121 415 6670 FrESHwindS
iS a rEgiStErEd cHarity: 1079968 and iS alSo a rEgiStErEd company: 3936089
• Information, Advice & Guidance • HIV & Sexual Health Information • Outreach Services • One to One Support • Support Groups • Volunteering Opportunities • Hate Crime Reporting • Same Sex Domestic Violence Advice • Signposting & Referrals • Training & Consultancy
Help us today and become a Beacon hero! How You Can Help
Make a regular monthly donation of £5, £10, £20, £50 or £100 or make a one-off donation. The choice is yours.
• Youth Services • Condoms & Lube
Donate Online
Registered Charity No: 1047375
Tel: 01543 411413 Email: info@staffordshirebuddies.co.uk
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
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years of HIV care
congratulates
Scott Ormerod for his continued commitment to working as an educator in prisons HIV Denmark for bringing European HIV activists together to discuss drug prescribing restrictions across Europe
Plusme Barnsley for communicating powerful messages to the students at Barnsley College on World AIDS Day Magda Conway at CHIVA for launching a wonderful new website supporting children and young people with HIV www.chiva.org.uk
Silvia Petretti for completing a one year tenure as co-Chair of the SHE programme, a peer support programme for women living with HIV www.shetoshe.org
Robert Fieldhouse
iStayHealthy
the FREE iPhone, Android app for people living with HIV iStayHealthy is the FREE, easy-to-use mobile application for people living with HIV. If you are recently diagnosed HIV positive or are already taking antiretroviral treatment, iStayHealthy can help you keep track of your health status and treatments. The application can help you to: • Store, track and monitor your results • Select and track HIV and other medication • Record any times you missed taking your medication • Record treatment side effects • Set alerts and reminders (e.g. for medication). In addition the application will provide you with: • Charts to show summary status such as your CD4 and viral load results (just rotate the device to see all results in one simple chart) • A glossary to explain important terminology • E-mail feedback, or e-mail your results. The iPhone version of iStayHealthy (version 3) has the following additional features: • Backup stored data to Dropbox • Record any illnesses/surgeries/procedures • Password-protect the app • Store details of HIV clinic or any other doctors. Users can e-mail or phone the clinic/doctor directly from the app. Due to its success iStayHealthy is now also available for Android devices. US magazine, POZ (www.poz.com), has voted iStayHealthy into the TOP 100 list of “people, things and ideas that reinvent—and improve—how we tackle HIV”. Contact: www.istayhealthy.uk.com istayhealthy.app@gmail.com twitter.com/istayhealthy iStayHealthy is also on Facebook and Google+ Compatible with iOS4.x or later. Compatible with Android 2.x or later. 42 Winter 2012
www.baseline-hiv.co.uk
i-base Q & A Question My CD4 count is 419. Can I stay healthy without treatment? Answer: You can stay healthy without treatment in the short term. With a CD4 count of 419, there is no immediate rush to start treatment. BHIVA guidelines recommend starting treatment at a CD4 count of 350 cells. However, they also recommend considering treatment, at any CD4 count, if you: have an HIV-related illness, are aged over 50, are pregnant, are co-infected with hepatitis B or C or want to protect a partner from infection. A good reason for starting earlier is that you keep more of your immune system. The higher your CD4 count the higher it is likely to reach. Many people have concerns about starting treatment. However, once they start and fit it into their lifestyles, they wonder why they worried in the first place. Answer: Angelina Namiba Question: Should I worry with viral load results of 94 and 114? I’m worried about my viral load. It was undetectable for years but now it’s 94. On a second test it was 114. My CD4 count is 750 and has always been high. I have been on Truvada and Kaletra for more than 4 years with no problem. Am I getting resistance? Answer: It is very unusual for viral load to rebound once it has been undetectable for a year or more. This assumes that you are still taking your meds and not missing doses. It also assumes that you have not started any new drugs recently that could interact with your HIV meds. Without knowing the timing of these viral load tests (were they both close together?) I can only talk in general. However, because viral load tests are not always so sensitive at low levels, your doctor would probably interpret both results to be the same. Rather than worry, have another viral load test done and then discuss the new results with your doctor. About half of increases that stay less than 200 are either lab errors or blips that will become undetectable again without changing treatment. Answer: Simon Collins 44 Winter 2012
i-base 0808 600 8013
ask a question by email, online or phone
questions@ i-Base.org.uk www.i-Base.info/qa
0808 600 8013
take control of your treatment
LASS will be 25 years old in June 2012. LASS’s work and approaches have changed significantly over 25 years in response to the changes in the HIV pandemic, the development and improvements in HIV treatment and management and the expanding global community in which we live and operate.
L A S S
These are our themes for the year: * Beyond the Tombstone: Living a Life with HIV * People Like Us: Older people living with HIV * One of Us: HIV as an everyday sexual health issue * From Local to Global to Local in 25 years: changing our response to HIV We encourage you to get in touch with us and get involved to make the LASS 25th year a living, learning and empowering experience. You can find out more details from April 2012 on our website: www.lass.org.uk
KPS TREBULLOM Respite & Retreat Bed & Breakfast Kernow Positive Support P. O. Box 85 Bodmin PL31 1ZN 01872 262221 office@kpsdirect.com www.kpsdirect.com Supporting people living with HIV in Cornwall with a range of specialized services, providing respite, retreat and bed and breakfast opportunities nationally. Registered Charity No. 1104947
Leeds Skyline is committed to providing quality services for anyone living with or affected by HIV living in Leeds. 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
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
David Rowlands
Breaking in to prison
Recently, in my role as an outreach health promotion worker for Staffordshire Buddies, I was asked to speak with the GBT group (gay, bisexual and transsexual group) at HM Prison Stafford, on my experiences of HIV & hepatitis C. Approaching the Victorian prison was a very daunting experience. Stafford prison has the largest number of GBT prisoners attending support services in England.
‘The prison governors have agreed to fly a rainbow flag over the prison to mark Gay History Month.’ The prison staff wore black uniforms, their keys clinking loudly. All inmates wore the same standard grey tracksuit, effectively stripping back their identities. The officers are always greeted as “Mr. X,” “Sir” or “Boss”, but within the GBT group it’s agreed everyone should be called by their first name. This gives the inmates an ability to relax and have some quality time together openly discussing issues, which may be affecting them. My talk focused on how I manage my healthcare, communicate with my healthcare team, adhere to medicines and live long-term with chronic disease. I spoke with one guy who felt his treatment adherence had been compromised by the fact that the prison staff keeps hold of his medicines. Should the inmate be able to self-medicate and take ownership of his treatment? What would happen if there was a lock down? It was fantastic to see that inmates showed an
interest in the session. At the outset I sensed the inmate’s tension, but they soon relaxed and were able to ask very open and honest questions. Like in many outreach settings it was important to provide a basic level of HIV knowledge, but some individuals demonstrated a great understanding. Some prisoners had concerns about what happens in the transition period after they are released or moved prison; would they have sufficient meds until they were linked up with a clinic on the outside? We take privacy as a guaranteed privilege. In prison, privacy is not a top priority. We can only imagine what it is like if you are recently diagnosed and people know your status before you’re able to digest the information yourself. In early 2012 the prison is planning a Gay History Month exhibition. The prison governors have agreed to fly a rainbow flag over the prison to mark the event. This is unprecedented, the first time in history that a UK prison has flown a rainbow flag. Staffordshire Buddies have been asked to make a programme on GBT issues such as HIV and hepatitis C for the prison radio. We hope this will encourage prisoners to take a test as well as begin to break down stigma within the prison. Work is underway to look at how this project can be duplicated across the prison service. There will be always be unique challenges in this setting, but with strong working partnerships, such as the one Staffordshire Buddies has established with HMP Stafford such projects should go from strength to strength. www.baseline-hiv.co.uk 47
news: treatment Low dose tenofovir and powder formulation approved for kids
Gilead recently announced that the U.S. Food and Drug Administration (FDA) has approved tenofovir (Viread) in combination with other antiretroviral drugs for the treatment of HIV in paediatric patients ages 2-12. The FDA approved a supplemental New Drug Application for three lower-strength once-daily tablets of Viread in doses of 150 mg, 200 mg and 250 mg for children ages 6-12. The agency also approved a New Drug Application for an oral powder formulation of Viread for children ages 2-5.
New draft BHIVA treatment guidelines published
The British HIV Association (BHIVA) published a draft version of its new HIV treatment guidelines in early February. The guidelines recommend people start HIV treatment at a CD4 cell count of 350, but state that people who wish to start earlier (to reduce the likelihood of HIV transmission to a HIV negative partner should be allowed to do so. And treatment is recommended earlier than 350 for people with cancer, hepatitis, tuberculosis, kidney disease, any AIDS-defining illness and in pregnancy. BHIVA recommend people start treatment with tenofovir and FTC (co-formulated as Truvada). In the past BHIVA recommended efavirenz only as the preferred third drug but the latest guidance has expanded the options to include the integrase inhibitor raltegravir (Isentress), and the ritonavir-boosed protease inhibitors atazanavir (Reyataz) and darunavir (Prezista) boosted by ritonavir. The guidelines can be viewed in full at www.bhiva.org and the consultation period on the draft will run until March 5. 48 Winter 2012
New etravirine formulation
Janssen recently announced the launch of a 200mg formulation of their NNRTI etravirine (Intelence). The recommended daily dose of 200 mg etravirine is one tablet taken twice daily following a meal. The original formulation required 2 x 100 mg tablets twice-daily. The tablets may be dispersed in a glass of water.
New tenofovir formulation moves into larger study
Gilead has announced it is beginning a Phase 2 clinical trial evaluating GS-7340 for the treatment of HIV in treatment-na誰ve adults. GS-7340 is a novel prodrug of tenofovir, the active agent in Viread. In previous studies, GS-7340 has demonstrated the ability to provide greater antiviral efficacy at a dose that is ten times lower than Viread.
New nevirapine formulation
A new prolonged release (PR) formulation of nevirapine at 400 mg once-daily is now available in the UK. It is still necessary to take a lead in dose of 200 mg once daily (using the original formulation).
Robert Fieldhouse
High rate of body shape changes in positive kids New research has identified a high rate of body shape changes and raised blood fats in children living with HIV. Having ever taken d4T (Zerit) was associated with fat loss. Around half of the children and adolescents in the 426 person study had lipodystrophy. 2 out of 3 infants who were also living with hepatitis C experienced body shape changes. Body shape abnormalities were also seen in 29 children who were not taking HIV treatment, suggesting a role for HIV itself. In total 14% of children had elevated total cholesterol and 17% had elevated triglycerides, another kind of blood fat. The average age of children in the study was 12, with around 5 years of antiretroviral usage. The researchers argued that “several studies have reported a negative impact of body fat changes on self-esteem and psychological profile in HIV-infected adults…little is known about the impact on children and adolescents, but this is likely to be an issue for adolescents, given that this is a time when self-image is important.”
Elvitegravir looks good out to 2 years
Gilead Sciences recently announced that its still-in-development integrase inhibitor elvitegravir continued to suppress HIV viral load as well as raltegravir (Isentress) in combination with a boosted protease inhibitor at 96 weeks in a Phase 3 study. Elvitegravir is dosed once-daily compared with twice-daily for raltegravir -- but it needs a booster to maintain steady levels in the body. Gilead is developing a tablet combining Elvitegravir and its booster along with tenofovir and FTC.
Pets are good news for women with HIV
Having a pet appears to be beneficial to women living with HIV and trying to manage their condition, according to new research. The study focuses on which social roles assist women in taking their medicine consistently, following doctors’ recommendations and living healthier lifestyles. The most powerful social roles were being a mother/grandmother, being a person of faith, an advocate, an employee and being a pet owner. All roles had positive impacts and empowered women to be more proactive in the management of their health.
Drugs, alcohol and coinfections contribute to early death
Danish researchers have concluded that people living with HIV taking antiretroviral therapy have the same chance of dying as people in the general population. But drugs and alcohol and living with additional coinfections such as hepatitis C increased the likelihood of illness and death. Patients with a sub-optimal response to HIV treatment had a 58% chance of living until 65 years of age. This dropped to 30% for people with co-infections, and to just 3% among people with heavy drug or alcohol use. www.baseline-hiv.co.uk 49
Do you have life insurance? Financial advisers Unusual Risks were contacted recently by a young family who were looking to protect their mortgage in case of the death of one of the adults. Lisa and Patrick had been looking at taking cover through their current mortgage lender, but felt intimidated by the HIV questions on the bank’s application form. They felt uneasy because Lisa is HIV positive and Patrick is HIV negative, so were uncertain how their bank would treat them after completing some questions on the application. The bank’s life assurance application specifically asked them if either of them are HIV positive or had placed themselves at risk of HIV. Both were particularly keen to get some form of Life Assurance in place, because they had recently had a new addition, a baby girl called Sophie. Their new mortgage figure was £72,500, which was to be repaid over the next 25 years and they were looking for an equivalent amount of life assurance cover. Lisa told BASELINE, ‘I feel so lucky to have baby Sophie and want to make certain if anything happens to either me or Patrick the mortgage is paid off and her future is secure. I realise that my HIV status may cause some problems getting Life Assurance, so we decided to contact someone who specialises in this area’. Patrick added, ‘I’m concerned that the bank may cancel our mortgage offer if they find out about Lisa’s HIV status. We are both working, so our health status shouldn’t really affect their decisions around mortgage and life assurance, but we just feel really uncomfortable answering their questions’. Some advice for people living with HIV looking to take life assurance or mortgages Unusual Risks is regularly approached by 50 Winter 2012
people living with HIV who feel uncomfortable answering questions on a life assurance application because they do not know the outcome once they have shared their private answers with their bank or insurance company.
‘Only answer questions about your HIV status if you are confident that the bank or insurance company is actually offering products to HIV positive people.’ Our advice is only answer questions about your HIV status if you are confident that the bank or insurance company is actually offering products to HIV positive people. If you are in any doubt seek advice from a specialist who knows which companies are friendly to HIV positive people. Currently only 50% of life insurance companies offer Life Assurance to HIV positive clients and very few bank insurance companies are offering this product because it is still a very new product in the market place. Be sure that your adviser knows the market sufficiently to give you the best advice possible. The criteria that companies use when agreeing life assurance varies by some margin, so, your adviser will need to ask you some questions about your CD4 count, viral load and the medicine you take. Only share your medical details if you are certain the adviser has the knowledge to help you. We have a policy of approaching every company on behalf of every client, because this is the only way of keeping track of any new developments or trends in both the HIV life assurance and HIV mortgage markets. Be sure to ask if you are receiving independent financial advice.
Chris Morgan So Lisa and Patrick? We arranged separate Life Assurance policies for Lisa and Patrick over 25 years. For Lisa we arranged £50,000 of HIV Life Assurance at a premium of £29.86 per month and for Patrick we arranged £72,500 of Life Assurance at a premium of £6.86 per month. Also, during a review of their mortgage we discovered that we could save them £49.00 on their current monthly payments. The deal recommended had free legal fees, valuation and a lower interest rate, making it far easier for them to take on the new insurance premiums. Unusual Risks are specialists in looking after HIV positive clients. 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 1
www.baseline-hiv.co.uk 51 14/07/2011 10:01
HIV and hepatitis C coinfection amongst gay men – time for a strategic response Coinfection of HIV and hepatitis C has been an issue from the early years of the HIV epidemic, in particular amongst people who inject drugs. Sharing needles and other injecting equipment is a particularly efficient way for blood-borne viruses such as HIV, hepatitis C and hepatitis B to be transmitted. In the UK the number of injecting drug users with HIV remains low thanks to an early and effective harm reduction response but nevertheless 83% of HIV positive injecting drug users are co-infected with hepatitis C. Another group who have experienced a high rate of hepatitis co-infection is people with haemophilia. In the 1980s it became apparent that about 1,200 people in the UK had been co-infected as a result of contaminated blood products. Thankfully now the blood supply is very safe. In recent years an increasing number of gay men appear to have acquired hepatitis C during sexual contact. Initially some people were sceptical that sexual transmission of hepatitis C was even possible, particularly within monogamous heterosexual partnerships, but it is now very clear that it can take place in certain circumstances. It is striking however that there does not seem to be much evidence of the transmission of hepatitis C in the absence of HIV. Hepatitis C rates amongst HIV negative gay men are the same as those of the general population. But 7% of HIV positive gay men in the UK are co-infected with hepatitis C. This is a much smaller proportion than amongst injecting drug users, but there are many more HIV positive gay men than there are HIV positive injecting drug users so in fact, in terms of absolute numbers, there are as many (if not more) co-infected gay 52
Winter 2012
men in the UK as co-infected injecting drug users. NAT felt it important to look at whether UK policy was responding effectively to HIV/hepatitis C co-infection, particularly amongst gay men. We have published a new report, ‘HIV and hepatitis C co-infection’, which looks in detail at UK coinfection data, our prevention and treatment response, and what more we can do to reduce co-infection rates and meet the needs of people living with both conditions. What is hepatitis C? Hepatitis C is a blood-borne virus, which affects the liver. There is no vaccine for hepatitis C nor is there any treatment that is effective as postexposure prophylaxis. About 15% of people who get hepatitis C naturally clear it from their system in the first few months after infection. For the remaining 85%, hepatitis C becomes a long-term chronic condition and about a third of this group, in the absence of treatment, will develop serious liver disease such as chronic liver inflammation, liver cirrhosis or liver cancer over 15 to 25 years. Treatment is available using two drugs (pegylated interferon and ribavirin) and lasts usually for 48 weeks or 24 weeks if you have acquired hepatitis C recently (in the past 6 months). There is an avalanche of new hepatitis C drugs on the horizon. With the current treatment there can be serious side effects such as flu-like symptoms, hair loss, nausea and depression. Treatment is effective in clearing the virus from the body in between 40% to 80% of cases, depending on factors such as the virus genotype and when treatment is begun.
Yusef Azad
The best results occur in those who are still in the first few months following infection (the ‘acute infection’ period).
‘7% of HIV positive gay men in the UK are co-infected with hepatitis C.’ The two conditions can complicate each other in the individual. For example, co-infected people appear more likely to develop liver damage compared with someone living with hepatitis C alone. It is also the case that treatment success rates for hepatitis C amongst those co-infected are about 60% of those who only have hepatitis C. Good news is that HIV treatment is equally effective for those who also have hepatitis C. There are one or two older and less commonly used HIV drugs which can cause liver side-effects and which should not be used if you have hepatitis C or are taking treatment for it but doctor and patient can bear this in mind when deciding on medication. Very helpful guides to hepatitis C for people with HIV have been published by HIV i-base and NAM. Liver disease (caused by co-infection with hepatitis B and C) is now emerging as a significant cause of death amongst people with HIV (accounting for 6% of deaths in the 2006 BHIVA mortality audit). We must continue to advocate for comprehensive, fully funded harm reduction measures for people who use drugs. It is not entirely clear how hepatitis C is sexually transmitted among gay men. Unprotected anal sex, fisting, group sex and the sharing of sex toys are all mentioned as sexual behaviours which carry www.baseline-hiv.co.uk 53
a risk of acquiring hepatitis C risk for HIV positive gay men. Fisting seems to be most frequently mentioned by co-infected gay men as a possible risk factor. Unprotected anal sex by contrast whilst a risk factor for HIV does not seem as significant a transmission route for hepatitis C in the absence of the other risk factors mentioned. We may be underestimating the role that drug use is playing in transmitting hepatitis C amongst gay men, both injecting drugs but also sharing snorting equipment (straws etc). Research has shown that a significant proportion of gay men co-infected with HIV and hepatitis C who are successfully treated for hepatitis C are re-infected within a short period – a study at the Royal Free in London, for example, found that 40% of those successfully treated were re-infected within two years. There are clearly prevention needs for many gay men, which are not being met. There have been some important campaigns by THT and GMFA alerting gay men to hepatitis C risks. But as yet there has not been an agreed strategic approach as to how we might reduce co-infection amongst gay men – a strategy which brings together some clear and focussed health promotion work with more targeted intensive support in the HIV clinic. NAT is recommending that we develop such an explicit strategic approach as soon as possible. We are also recommending further clarification of our prevention information. It is important for us to focus in on some key risky behaviours – sex involving the possibility of trauma or blood-to-blood contact (fisting for example) carries significant risk, as does group sex especially if you either do not use condoms or fail to change condoms between partners. For HIV positive gay men who are sero-sorting we need to make clear the ongoing risk of hepatitis C and the effectiveness of condoms in continuing to protect against other serious viral and bacterial 54 Winter 2012
infections. There are worrying accounts of men relying on partners’ disclosure of hepatitis C status – which we know already from HIV doesn’t work, because many are undiagnosed and many others are afraid to disclose because of stigma. And that is a wider issue we must also face – the stigma within the gay community around hepatitis C. One gay man who participated in a research study spoke powerfully about it, ‘Hep C is not yet owned by the gay community like HIV, and if it isn’t owned, then it is outside and more stigmatised … Even within the gay community, and the HIV community too, it has created a ‘them’ and ‘us’ type situation’. The British HIV Association (BHIVA) recommend annual hepatitis C testing for all HIV positive patients but in a recent BHIVA audit only 66% of patients were having annual tests. For gay men at sexual risk more frequent testing is recommended but it is not clear how frequently or what constitutes sexual risk for hepatitis C transmission – the result is that in all probability ‘more frequent than annual’ hepatitis C screening of gay men is uncommon. So the NHS must also take further steps to address coinfection - improving its hepatitis C screening for HIV positive people. And not just screening; those living with both HIV and hepatitis C need careful monitoring for signs of liver disease and to be in the care of a multi-disciplinary team. The BHIVA audit suggested that such care was for the most part in place and functioning well but we need to make sure at a time of immense upheaval within the NHS and commissioning that standards are maintained and indeed further improved. Co-infection of HIV and hepatitis C is serious, and for gay men we haven’t yet fully caught up with this new health challenge. We need a strategy, better testing, further clarity in our prevention information, anti-stigma work, and high quality treatment and care. www.baseline-hiv.co.uk
The day I died
For me this day was devastating, to say the least. The horror of it will be with me until the day I leave this earth. Each and every minute was as if in a slow-playing horror movie, so vivid yet so impossible. I was looking in on it all from a distance, devoid of any feeling. I was there in person but I could not surely have been a part of what was going on. That was from my perspective. As for my husband, I cannot even begin to contemplate his turmoil. He was the subject of the whole ‘movie’. He was the subject of this diagnosis namely an AIDS-related cancer, non-Hodgkin’s lymphoma. He was the patient named to undergo treatment and the one to whom the prognosis would apply. I did not and could not share his feelings. I had an insurmountable situation of my own to face up to. He needed support but how could I give this when, to that date, he had kept the door firmly shut to me? He had been living a double life for many of our thirty-nine years of marriage. Appearing to the world outside to be a hard-working and happy family man, he was a closet homosexual living two lives, only acknowledged as such by the chosen of his friends. The day was Friday 25th January 2008. My husband had an appointment at 11.30am with the professor in the clinic at Chelsea and Westminster Hospital in London. I had arranged for a taxi to take us there as I did not know the route and the weather and traffic were uncertain. The patient was far from strong having been hospitalized earlier in the month with pneumonia 56 Winter 2012
and septicaemia. Both of us trying to ‘put on a brave face’ we climbed the stairs from the basement car park to the ground floor- it was all he could do to walk. We had a twenty-minute wait for our appointment. We didn’t speak a word. We were shown into a side consulting room. I can still see every detail in there –the exact places where we sat, the consultation couch, the projection screen on the wall. We were introduced to the professor; his medical students followed him. My husband had to confirm his details and was then asked the question ‘Is it four or five years since you were diagnosed with HIV?’ I heard only the answer ‘about four years’ nothing else. I did not feel that I was in that room or indeed a part of the meeting being held. How dry my mouth felt. Had I really heard this? Never! My ears must be deceiving me! It must be a pack of lies! But it wasn’t, it was true. My husband was then asked the name of the doctor who had made the diagnosis. I heard his reply and his added comment that he had been having regular three-monthly check-ups ever since. Never have I ever experienced such shock, indeed I had never before been aware of the true meaning of ‘shock’. It still astounds me how it was that I was not completely overcome for I felt so ill with disbelief and amazement. The fact that he was HIV positive, I had only known this for nine days and now to learn that he had been diagnosed HIV positive some four years previously utterly overwhelmed me. He had attended other
Ann P
hospitals with various problems during these years and nothing had been said. How could he possibly have received treatment and concealed this condition? I just wished the floor would open and I could be swallowed up. I did not know this man. I certainly did not wish to know this man. Could he be my husband? Surely not! The father of my children? At this point it seemed a brick wall had been built between the two of us. There was no communication, no eye contact, no word exchanged. What a cruel thing after a lifetime together of caring so intimately about one other!
‘The stigma associated with HIV is still so great. It has the ability to break close-knit families and tear bonds’. Somehow the rest of the day passed. I went, as suggested, to have the HIV blood test myself. The result, although negative, I felt I had no care or desire to know. My future did not interest me. We were advised as to the necessary course of chemotherapy, which my husband would need to undergo. It would commence the following week. We proceeded to collect the copious quantities of medication, which he was to start immediately. I could not hold his hand. He had broken my heart leaving me completely and mentally destroyed and with a total distrust of mankind. I had been so badly betrayed by the person I had loved more
than any other in the world. Two years down the line after the death of my husband, I am writing this. My life and attitude towards life have been changed by him and by his deceit. I have one great hope -to convey a message which hopefully may give strength to direct the actions of someone out there who might find themself in a similarly difficult situation. If you are in a relationship with another, be it your husband, your wife or your partner, please be honest and don’t cover the truth. This condition attacking one’s immunity is so pernicious; knowledge of it should not be kept quiet or ignored. It will not go away and as yet cannot be cured. It should not be swept under the carpet for fear of hurting a partner or for fear that your partner may desert you. More hurt by far is caused by being dishonest and much of this is mental hurt. When I heard the truth, which came not from my husband’s mouth, the shock of the deception seemed to destroy me mentally. I found it impossible to come to terms with and acknowledge the facts. The one saving grace for our marriage is our two children who have given both of us strength and support throughout. They knew of their father’s secret some time before I knew and they held my hand as I pieced it all together. What a bombshell to hit our family! I must mention here that I shall forever be so very grateful to the Macmillan centre where I received lengthy sessions of professional counselling. At that time these stopped my head from sinking www.baseline-hiv.co.uk 57
below the level of the rising waters and enabled me to be in a position to write this today. That was the day I died. Maybe I should more correctly say ‘the day a part of me died’. I had loved this man for forty years. He had broken our marriage vows, that bond which had joined us. My heart had died. This was through dishonesty over his status. I would never have thought there could be anything as great as or more threatening than the fear of cancer. HIV managed to be that very thing. Looking back I think of those days of devastation, of those long nine months of enforced non-communication, of continuing chemotherapy and suffering pain and of mental torture when we were living in our own individual and isolated worlds. I inevitably lost my husband who in the last few weeks showed some remorse. He realised that his family had loved him unconditionally. We were all with him at his passing. I have only one recrimination, this being that I was unable to confront the cancer with him and talk to him during those last nine months. Sadly, this I feel was because he had kept his secret and when eventually it came out, it was too great for him to address. If this tragedy makes you stop and think, please heed this message. Be aware that HIV is a disease, which can deeply affect not only the person diagnosed but also those people closely concerned. There is so much more to my story than the small part, which you have just read. In today’s enlightened society the stigma associated with HIV is still so great. It has the ability to break close-knit families and tear bonds. The underlying prejudice remains intense even though we are decades on from the time when we were first alerted of its presence. Dishonesty and secrecy can only further this dreadful situation. 58
Winter 2012
Difficult situations always require time to be addressed if they are to stand any chance of being acknowledged, let alone accepted. The presence of HIV definitely needs this time. Your family or partner is deserved of time. Don’t deprive them of this essential element. We were deprived of time and as a result my children and I have been left in a continuing state of ‘emotional limbo’; a seemingly permanent position of ‘going nowhere’ in our minds as to how we feel or think about our last years. We had loved this man unconditionally but sadly he did not give the time with us to address his situation. I remain as his widow but one who has been deprived of the ability to mourn the man she loved. So I ask that you consider your options and the benefits, which might be attained in allowing those you love to be aware of your situation. Don’t rule out speaking the truth but if this seems too heart-rending, consult the professionals who would treat everything with the utmost of confidentiality. One certainty is that you would not be living a lie in a lonely world with your secret. You would receive every piece of emotional help and support to try to go along the most appropriate path for you and yours. Although the last two years have had a devastating impact on my life I cannot feel prejudice towards homosexuality. No man or woman has the right to judge but all too often they do. Each one of us is responsible for our own life; our actions can greatly affect others. I know what it means ‘to fall in love’ and to deeply care for another with all your heart but now sadly, I also know that it is possible ‘to fall out of love’ and as a consequence to bear hard feelings towards one’s own unforgiving attitude. Just know that there are always options in facing every problem.
Barge Breaks BASELINE has teamed up with NLTSG to offer its readers and members a chance of a fantastic weekend away, to meet new people and explore England’s most beautiful canals. 25th-27th May 2012 Location: Stoke Golding, Nuneaton in Warwickshire For £150, we offer you: • 2 night’s Accommodation • Welcome Drink and a Light Dinner on Friday Evening • Continental Breakfast, Lunch and Evening Meal on Saturday • Breakfast and Pub Lunch on Sunday
For dates and more information contact David at BASELINE on 0121 449 4405 or 07716 963 249 or email david@baseline-hiv.co.uk Please visit www.baseline-hiv.co.uk for future events. BASELINE runs this event on a not-for-profit basis.
Try life at 4 miles per hour
Robert Fieldhouse
news: hepatitis BMS 2 Drug Therapy Achieves Hep C Cure without Interferon
A two drug tablet combination of BristolMyers Squibb’s hepatitis C virus (HCV) protease inhibitor asunaprevir (formerly BMS-650032) and HCV NS4A inhibitor daclatasvir (formerly BMS790052) cleared the virus in one-third of people with hepatitis C genotype 1 who had previously not responded to interferon-based therapy, and both of the trial participants with genotype 1b, according to new research. This is the first evidence that hepatitis C can be cured without interferon. Diarrhoea was the most frequently reported side effect. All patients taking the dual combination remained hepatitis C free 6 months after the end of treatment.
BMS Buys Inhibitex for $2.5 Billion
Bristol-Myers Squibb is set to pay around $2.5 billion to buy Inhibitex Inc, a smaller biopharmaceutical company with a promising hepatitis C drug. Inhibitex’s hepatitis C nucleotide polymerase inhibitor INX-189 is in the second stage of testing required by regulators before approval. This should mean BMS is able to develop all-oral combinations with high cure rates, as it already has a number of promising hepatitis C medicines in development. It’s likely these new combinations will have better cure rates, be able to be taken for a shorter time and have fewer side effects than the current gold standard treatment of pegylated interferon and ribavirin. 60 Winter 2012
HIV Protease Inhibitor Interaction with Boceprevir
People living with both HIV and hepatitis C (HCV) who take the HCV protease inhibitor boceprevir (Victrelis) alongside a ritonavir-boosted HIV protease inhibitor may experience drug-drug interactions that sink concentrations of both drugs to ineffective levels, boceprevir’s manufacturer Merck has recently warned. Studies currently ongoing suggest that boceprevir and telaprevir, when taken alongside the current gold standard treatment of pegylated interferon plus ribavirin improve the likelihood that coinfected people will gain a cure from hepatitis C treatment. Right now boceprevir and telaprevir are unlicensed for people with HIV and hepatitis C but doctors are able to prescribe them if there is a particular clinical need, such as not having responded to prior treatment. If you are currently taking boceprevir, discuss the findings with your doctor.
Gilead buys Pharmasset for $11 billion
Gilead, the US pharmaceutical company, has acquired Pharmasset in a $11bn cash deal. The deal consolidates Gilead’s own hepatitis treatments with two approved medicines and a further half a dozen in its pipeline. Pharmasset has three hepatitis C drugs undergoing clinical trials, including one in a strategic collaboration with Roche.
Day or overnight bespoke outdoor pursuits tailored to the needs of your organisation. From simple day walks to adventure taster sessions, our events are the perfect way to engage your service users, build confidence and encourage peer support. We can host our events nationwide giving you easy access to develop life skills whilst enjoying some great experiences... To see what we can do for you please call Gareth on 0161 401 0460 or email gareth@largeoutdoors.com
www.LargeOutdoors.com
Gain a different perspective...
Joel Korn
Many Faces of HIV Project UK, reflections of you, me and us... The Many Faces of HIV 2012 Project UK marks 30 years since the first people died with AIDS in the UK. The project will be delivered throughout the year leading up to World AIDS Day 2012. Following an exhibition that will be launched in London initially, the project will tour around the UK throughout 2013.
‘Send us an email and we will let you know exactly how you can get involved.’ There will be various events and activities throughout the year to raise awareness as well as funds for the project. Milestones to date In November 2011 an advisory group of people living with or affected by HIV/AIDS was set up. Made up of professionals working in the HIV sector and people living with or affected by HIV who want to give something back to the community, their expertise, energy and interest in the project have been phenomenal. This UK project offers a platform to represent the diverse lived experiences of people living with HIV by: Enabling visibility through creativity Creating an exchange between people living with HIV and untested or HIV negative people Informing and inspiring young people about the realities of living with HIV Challenging stigmatized perceptions of living with HIV
. . . .
Reflections of you, me and us: You – If you are living with HIV and would like the opportunity to tell your story through 62 Winter 2012
whatever creative medium you feel appropriate (whether that be drawing, a photograph, a poem or letter), send us an email and we will let you know exactly how you can get involved. Me – Perhaps you have wanted to give something back to the community, want to meet others living with HIV and gain new skills by volunteering, just touch base and we shall find a way of you being involved. Us – The project will mark the history of HIV and provide the community a space to remember the people they have loved and lost due to HIV/ AIDS. So just contact us if you have a photo of someone that you would like to be remembered. We will only mention their first name and we ask for one ‘off the wall memory’ you have of them that you are happy to share. Youth - In terms of young people, the project will provide an exhibition for young people to learn about HIV/AIDS and schools and youth clubs will be able to visit the exhibition. There will be various exciting, creative and innovative ways for young people to become involved with the project. Community – We are seeking community support, if you are a community group, organisation or clinical service offering support to people living with or affected by HIV, and would like to be affiliated to the project, please just contact us and we shall let you know how your service may get involved. You can keep informed of the project by following us: Twitter: @manyfacesofhiv Facebook: manyfaces@groups.facebook.com Website: manyfaces.org.uk Email: info@manyfaces.org.uk www.baseline-hiv.co.uk
e n i h s r o Come rain Positive people with stories to tell. Wherever you are on your HIV journey, help is at hand. Talk to your healthcare professional and ask for the DVD and booklet ‘HIV My Story’
Putting
1st
Patients
Date of preparation: Sept. 2011 001/UKM/11-09/MM/1146c
Susan Cole
dear susan... I’m due to give birth to my baby in a month and I’m a bit confused as the midwife has advised me against breast feeding despite me having an undetectable viral load. What’s your advice? I’m really upset that I can’t breast feed. Firstly congratulations. Enjoy your last month of freedom. As a mother of four I know how draining children can be. I write this to the sound of “Mummy, wipe my bottom I’ve done a runny poo.” As well as to the black looks from my sullen teenager who’s been grounded after getting hammered on New Year’s Eve. I do understand your disappointment about not being able to breast feed. We are bombarded with messages about how “breast is best” when pregnant. Yes, there are benefits to breast feeding, however if you’re living with HIV in the UK or in other countries where there are safe alternatives to breast feeding, the guidelines remain that the safest option is to bottle feed to minimise the risk of transmitting HIV to your baby. You raise a valid point about having an undetectable viral load. One of the best bits of news that has come out recently is how much having an undetectable viral load reduces the risk of transmitting HIV to a partner. Even in pregnancy, when before women with HIV were encouraged to have a C-section, now if they have an undetectable viral load, a normal delivery is usually recommended. So why isn’t this the case with breast feeding? An undetectable viral load would certainly reduce the risk of transmitting HIV through breast feeding, but that doesn’t necessarily mean there is no risk of transmission. Your viral load could potentially go up unexpectedly for example. However the new guidelines currently in development do appear to have softened slightly on this issue. Bottle feeding is still strongly 64 Winter 2012
recommended, however if a mother on treatment with an undetectable viral load still decides to breast feed it’s recommended she breast feeds exclusively (so absolutely no mixed bottle and breast feeding!) and stops by six months. The mother and baby also need to be tested monthly during the breast feeding period. So if you do choose to breast feed it’s very important you discuss this with your clinic and don’t just do it secretly. You don’t say why you’re upset you can’t breast feed? Some women are worried that they’ll be questioned or judged by others if they are bottle feeding. If this is a concern for you your clinic can offer advice about handling any awkward questions. Something as simple as “my milk wasn’t satisfying the baby” could suffice. The cost of formula milk can also be an issue, however there are schemes in place in some areas to provide free formula milk for mothers living with HIV who can’t afford it. I breastfed my two oldest children and bottle fed by two youngest. Although initially disappointed not to be able to breast feed, I can honestly say the bottle feeding thing was a doddle. My bottle fed children slept through the night sooner and wanted to feed less often. A recent study has found that children who were breast fed cried more, smiled and laughed less and were harder to get off to sleep than those given formula milk! So is bottle feeding really such a bad thing? My breast fed children and bottle fed children are equally bright and healthy, as well as equally annoying. Good luck! www.baseline-hiv.co.uk
GET INVOLVED IN AIDS 2012! REGISTRATION Open 1 December 2011 Standard fee deadline 23 February 2012 Late fee deadline 3 May 2012
GLOBAL VILLAGE AND YOUTH PROGRAMME SUBMISSIONS Open 1 December 2011 Close 10 February 2012
ABSTRACT SUBMISSIONS Open 1 December 2011 Open late breakers 19 April 2012
WORKSHOPS APPLICATIONS Open 1 December 2011 Close 8 February 2012
SATELLITE SUBSCRIPTIONS Open 1 December 2011 Close 31 March 2012
EXHIBITION SUBSCRIPTIONS Open 1 December 2011 Close 25 May 2012
More information and all submission, registrations, applications and accommodation bookings online at: www.aids2012.org
Follow us on Facebook: www.facebook.com/aids2012
HIV in the UK
‘People living with diagnosed HIV in the UK can expect a near-normal life expectancy.’
‘More than 80% of people living with a diagnosed HIV infection live within five kilometres of an HIV service.’
‘In 2010, 87% of patients with a CD4 count <350 cells/ mm3 were on treatment, an increase from 76% in 2007.’
89%:
Proportion who had a CD4 count test within one month of their HIV diagnosis.
87%:
Proportion who had a CD4 count <350 cells/mm3 and were receiving antiretroviral therapy.
85%
Proportion who had an undetectable viral load (VL<50 copies/ml) within one year of starting antiretroviral therapy.
81%:
Proportion who had a CD4 count ≥350 cells/mm3 after at least one year in HIV care.
HIV in the United Kingdon: 2011 Report, HPA. 66 Winter 2012
www.baseline-hiv.co.uk
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