Eurovision: West End Stars Raise HIV Funds Stribild: New 4-in-1 HIV Medicine Perspectives: On Hepatitis C Treatment Summer 2013: issue 16
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In unprotected anal sex bottoms are 7 times more likely to contract HIV than tops. Use condoms & #FckEqual.
METRO
HIV Prevention & Support Registered Charity # 1070582 W metrocentreonline.org
facebook.com.FckEqual #fckequal
In this issue we look in depth at the results of our recent patient involvement survey and interview Harvard’s Dr Cal Cohen about Gilead’s new four-in-one pill Stribild that’s just been approved in Europe. Whether the NHS decides to fund Stribild, and you can access it, depends on the ‘nod’ given by the HIV Clinical Reference Group to the NHS after consultation with the British HIV Association. More should become clear in the coming months, but if you have difficulty accessing the new medicine, please drop us a line at editor@baseline-hiv.co.uk Stribild arrives just a few months before efavirenz loses its patent protection and increasing use of generic drugs is on the cards.
In this issue 4 bylines 6 letters 8 headline: UK HIV news 14 headline: global HIV news 16 patient involvement survey results 20 west end eurovision 22 drug use and gay men
NAM recently announced the findings of its survey into how positive people feel about the use of generic HIV medicines in the UK. Whilst understanding why the switch has started (to save money), many respondents would be unwilling to switch medicines if it was associated with a reduction in how well the treatment worked or resulted in increased side effects or doses. You can see the results online at www.aidsmap.com and while you are there contribute your views to the NAM/EATG Consultation on its Community Consensus on Treatment as Prevention.
28 interview with Dr. Cal Cohen
Gilead and Ipsos MORI have just launched a survey into people’s experience of HIV treatment services. You can complete it at www.crtsurvey.com/HIVService
64 between the sheets
Please keep in touch with us by joining our Facebook Group BASELINE and following us on Twitter @BASELINETWEET.
72 BASELINE congratulates
Thanks to ViiV Healthcare who supported the distribution of this magazine. Cover Image: Stephen Smith (Life in Living Color)
32 alere: rapid CD4 testing 34 NAT: spring awakening 36 headline: HIV treatment news 40: Chris Morgan 44: hepatitis section 60 integrated care pathways 68 UKPositiveLad 74 i-base Q&A 77 PPE Summit 2013 78 lifeline 80 myline: Joel Korn 82 finelines and numbers
Contact the team: Editor: Robert Fieldhouse robert@baseline-hiv.co.uk Associate Editor: Jane Phillips editor@baseline-hiv.co.uk News Editor: Chris O’Connor chris@baseline-hiv.co.uk
Summer 2013
Editorial Administrator: Tom Matthews Development Manager & Photographer: David Rowlands david@baseline-hiv.co.uk Proof reader / Social Networking Michael Duggan / Rebecca Gibson Designer: Gareth Williams Intern: Daniel Jon
For magazine and web advertising please contact david@baseline-hiv.co.uk Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in BASELINE is not to be taken as any indication of health, HIV status or lifestyle.
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Deadlines for the next issue Copy 03/09/2013 Advertising 10/09/2013
Robert Fieldhouse has been working and
Yusef Azad is Director of Policy at NAT (National
volunteering in the HIV sector since 1997.
AIDS Trust)
Jane
Martin Georgiev is the Project Officer at the Eu-
Phillips spends her time Tweeting, Facebooking and fiddling about with words. Looking forward to another exciting year growing with BASELINE. CHECK us out on Twitter @ baselinetweet and on Facebook by joining our group BASELINE.
Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicine. Busily attending medical conferences and scouting for the latest stories.
David Rowlands has extensive copy writing, photography, design and brand development experience across a range of sectors.
Chris Morgan is the man behind Compass, the gay financial advisers and Unusual Risks, the HIV financial advisers. He has been at the forefont of HIV financial issues for over a decade and co-wrote the HIV and insurance guidelines that the life assurance industry uses today.
Joel Korn is a member of the Support and Development Worker Team at River House Trust. He is a trained counselor (MBACP individual and group work) and is also a facilitator of Living Well’s Positive Self-Management Programme.
Léann Lavery is the Communications Manager at The Hepatitis C Trust. Her remit encompasses PR, marketing and social media management for the charity. Previously she held positions within the third sector and for global media and entertainment organisations. Summer 2013
ropean Liver Patients Association (ELPA)
Kathy HIV Bird is a woman living with HIV in Liverpool. Her twitter profile is @Kathybirdtribe and she has a paper.li weekly called HIV bird tweets. Rebecca McDowall is a Treatments Officer and Distribution Manager at HIV i-base. Gemma Peppé is Events and Campaigns Manager at The Hepatitis C Trust. Before working at the charity she worked as a music agent and studied film and documentary research at London College of Printing. She is currently making her second documentary Catching The Virus which chronicles her experience on a clinical trial.
Roy Kilpatrick has worked in HIV policy, prevention and addictions since 1989 and writes in his own blog, scotfreehiv, and forpositivelite.com. He has contributed on behalf of people living with HIV to national health promotion campaigns, HIV standards and strategic planning with NHS and Government bodies, and was a founding member of Gay Men’s Health.
Tom is a blogger, columnist and HIV activist who writes about HIV and sexual health for a number of publications including Attitude Magazine, FS Magazine, Midlands Zone under the name UKPositiveLad. He’s also made appearances on BBC Radio & TV.
www.baseline-hiv.co.uk
Email your letter to: editor@baseline-hiv.co.uk
Dear Robert Thanks very much for organising the BASELINE weekend in partnership with National Long-Term Survivors Group at Trebullom in Cornwall. It was a great event. I made a few new friends and I thought KPS Trebullom was a wonderful place; great hosts, food and company. PS Thanks for the lift. Tom
Dear BASELINE Team I wanted to write in to say how much I had enjoyed reading David Randolph’s article on patient user groups. I’ve only been diagnosed 3 years, have had the odd bout of bad health, now thankfully well. My clinic has a user group and I have found it too be a good way to meet other people with HIV. Keep up the good work. Name withheld
Great new hepatitis section. Have been trying to get my head around all the new drugs and it will give me something to discuss with my clinic. I tried therapy and it did not work- would be good to have some real life treatment experiences as well as the clinical stuff. Hope to try the new therapies when they become available. Matt, Manchester
Dear Robert Thanks for coming along to the National LongTerm Survivor’s Group Weekend for Recently Diagnosed People. I found your presentation very stimulating and you did a great job to get everyone to share their experience. I really enjoyed talking about HIV as I don’t often get the chance in my real life. Thanks for the follow on Twitter. Name and Address withheld Summer 2013
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BASELINE Magazine at your fingertips Supported by
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Chris O’Connor
news: UK 14 HIV Positive People Treated Within Weeks of Infection Control HIV
GPs Still Missing Signs of HIV
The opportunity to diagnose people earlier may be being passed up according to a new study at BHIVA 2013. According to research with 22 GP practices in Hackney, East London, of 35 HIV positive people who had presented at GPs, with HIV indicator conditions (commonly blood dyspraxia and bacterial pneumonia) of HIV - only 18 were offered a HIV test. However the overall trend for HIV diagnosis by GPs is improving - nationally, in 2003 4.8% of HIV diagnoses were made in general practice - this had risen to 10.4% in 2010. In this study 30% of all HIV diagnoses in Hackney are made at GP practices. 08
The 14 French patients who have achieved viral control of HIV after starting treatment very early and stopping antiretroviral meds have led to some people to ask, tentatively, is the cure here? The answer appears to be “Not Yet.” The 14 patients started therapy within ten weeks of infection. The average time from HIV infection to diagnosis in the UK was 3.2 years in 2010, say Public Health England. The patients stopped their meds under supervision after an average of three and a half years. Since then they have been off HIV medication for between four and nine years. They have very low levels of HIV which have not rebounded - similar to the small group of people who have a genetic ability to control HIV for an extended period without treatment; ‘elite controllers’. Though interestingly, the French group lack a HLA gene common to elite controllers. Dr Asier Saez Cirion, Institute Pasteur, commented, ‘they still have HIV, it is not eradication of HIV, it is a kind of remission.’ Dr Andrew Freedman, Infectious Diseases Consultant at Cardiff University School of Medicine said, ‘whether they’ll control it forever, or whether it’ll be for a number of years and subsequently progress and the virus will reappear - we don’t know.’ The group of people known as long-term non-progressors (or elite controllers), like the French patients, have low levels of HIV. At the moment it is difficult to know if these patients are an entirely new group. Although the development is good news, at a population level, diagnosis of HIV at a very early stage is a difficult task. Even with widespread testing, and awareness campaigns, it is over three years, on average, from transmission to diagnosis. Mathematical modelling estimates that 15% of people living with HIV could control of the virus if they initiated therapy within six months of infection and maintained it for at least a year. One doctor, Tim Lahey commented, ‘for these patients HIV is ‘ under control’ or ‘not doing bad thing right now’, that’s a far cry from being cured, we need people to stay on treatment, keep on using condoms and to wait for more universally applicable approaches to prevention.’ ++++
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Chris O’Connor
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news: UK Chris O’Connor reports from BHIVA 2013
BHIVA 2013 April 16-19 was well-timed this year after the game-changing Health and Social Bill went live on April 1st. The restructure of NHS health care commissioning in England and Wales, new patient ‘Care Pathways,’ - all against a background of funding cuts, was at the forefront of the 19th Annual Conference of the British HIV Association (BHIVA). ‘Who is responsible for re-setting patient expectations, as that experience is clearly going to deteriorate when frontline services are reduced or worse closed?’ This question, from the floor, from Dr Sheena McCormack, MRC and 56 Dean Street, London summed up the prevailing mood. BHIVA 2013 provided relevant, valuable, data and discussion – presentations are on the BHIVA website: www.bhiva.org/Presentations130417.aspx Professor Margaret Stanley presented a fascinating presentation about vaccines for Human Papilloma Virus HPV, which prevent cancers in women and men. She reported the success of the HPV vaccination project in Australia where genital warts ‘has virtually disappeared.’ Although MSM with HIV have around double the incidence of anal cancers, expanding vaccine coverage could be ‘stigmatising and discriminatory.’ What would the Daily Mail make of it, she asked? Image and performance enhancing drugs (IPEDS), primarily by men using anabolic steroids are rarely studied as an at risk group for HIV or hepatitis C acquisition – and are an underestimated source of onward transmissions, according to a study from the Health Protection Agency, now Public Health England. Data from the British Crime Survey suggests more men are injecting steroids than heroin. In this needle exchange survey one in ten report needle sharing. Five per cent had injected psychoactive drugs. One in three had ever 10
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HIV tested, less than a quarter had tested for hep C. 5% had antibodies to hep C. The survey suggests the level of infection may be rising among these ‘Fit and healthy men who don’t see themselves at risk of infection,’ the presenter reported. Therapeutic Tendering: with an annual spend of over £170 million London clinics saved £7.2m over two years by negotiating cheaper rates with pharmaceutical firms and switching a proportion of patients to cheaper medicines. Part of the switch included this follow up study. Between April 2011 and December 2012, 3606 people in London started treatment (12% of all London patients) and 4956 switched therapy (16% of London patients), mainly due to side effects; only 8% of people who switched did so as a result of new prescribing guidelines, presenter Paul Benn told delegates. According to the study there was no difference in CD4 or viral load outcomes. Generics, and their continuing impact was reviewed by Dr Mark Nelson of Chelsea and Westminster Hospital ‘How can we save money while we want to give new and exciting treatments? One route is through savings on generic ARVs. This year 2013, efavirenz and ritonavir, comes off patent followed by FTC and darunavir in 2016. Nelson argued that patient involvement in decisions to switch is vital. Hep C reinfection. In a retrospective analysis of 191 patients at Chelsea and Westminster Hospital, almost 8% became reinfected with Hep C 24 weeks after clearance and/or treatment. These ‘high rates’ say researchers could have implications - targeted education on risk is much needed. Reinfection in a Hamburg German clinic was 22% after six years 2012. A study in the Netherlands (Lambers 2011) showed 33% of gay men became reinfected with hepatitis C within two years. +++-
Summer 2013
Chris O’Connor
PrEP: Next Step?
PROUD, the UK study using daily Truvada (tenofovir/emtricitabine) as Pre-Exposure Prophylaxis, (PrEP) for HIV prevention is finding volunteers slow to come forward. Application for a larger (5,000 man) study of PROUD has been put on hold, to see if interest in the current pilot study picks up. According to the PROUD website, 500 HIV negative men who have sex with men (MSM) are required. Since recruitment started in November 2012, 147 have joined the study, but the team were hoping for 225 by the end of June. A lack of awareness of PrEP is cited as a stumbling block to recruitment - one of the aims of the trial is to assess the interest among gay men to use PrEP. “Although recruitment has picked up, we are still substantially behind target,” says Sheena McCormack one of the lead investigators for the study. “I worry that we will end up concluding PrEP is a tool of no interest when we haven’t given it a fair shot. I firmly believe we can promote condoms and PrEP together in a responsible way, and if we don’t rise to this challenge we are failing the breadth of the sexually active community in the long term, but especially gay men right Professor Sheena McCormack now!” The design of PROUD is that participants are randomly split into two groups - half of the men that enrol on the study will have access to PrEP immediately, the other half will not have access to PrEP for the first year of the two year study. Everyone will be given access to condoms and safer sex advice. (See the PROUD website www.proud.mrc.ac.uk for the full protocol). One of the major aims of the study is to see whether PrEP changes people’s sexual activity and puts up their risk of HIV as a result. Participants are asked to keep a short diary, fill out a monthly questionnaire online and attend a clinic every three months. Other studies have shown that PrEP is effective but not completely in preventing HIV transmission, with levels of protection varying generally according to adherence to the pills. The reason for the study design, say investigators, is to check that PrEP can be used safely and responsibly in the UK. There are universal concerns expressed around PrEP promoting unsafe sex and a consequent increase in STIs - this can only be assessed when men know they are taking an active group, and by comparison to men who are not taking drug - hence the PROUD trial design. Community concerns and input are being continually sought to see if these are changing as the awareness and demand for PrEP grows.. www.baseline-hiv.co.uk
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Chris O’Connor
news: UK ‘AIDS CURE’ Premature
A recent story in the Daily Telegraph, ‘Scientists on Brink of AIDS Cure’ highlighted the perils of combining sensational ‘cure’ reporting and the reach of the internet. Within days of the story, sources ranging from Fox News to Perez Hilton’s blog were repeating that scientists are ‘close to a cure for HIV.’ The UPI news agency for instance, reported; ‘According to the Telegraph, researchers are within months of a breakthrough that could lead to an affordable cure for the millions of people living with the disease.’ However full reading of the original report shows this conclusion to be wildly premature. The Telegraph has since revised the article. “We are not on the brink of an HIV cure”, says Dr. Ole Søgaard from Aarhus University Hospital. “We have an exciting study in which a potential antiHIV latency reversing agent is tested in persons with HIV. We are making good progress, but there is still a long way to go.” New research into HDAC inhibitors, which may activate the reservoir of latent HIV in resting CD4 cells will be presented at the International AIDS Society meeting this summer in Kuala Lumpur, Malaysia. The authors state that they regret if anyone got the impression from reading the article that there may be a cure for HIV in the immediate future. Like many others, the researchers believe that a cure for HIV is an achievable goal, but most likely it will take many years, numerous basic science discoveries, and medical trials before a HIV cure may actually be reached. 12
Cardiff Prescribing Policy Protested
A new policy of obliging people living with HIV to collect their HIV medicines each month is being pursued in parts of Wales. The new system, designed to cut back on wastage, could compromise the health and quality of life for people living with HIV according to Welsh Assembly member, Eluned Parrott. The 28-day prescribing model was recommended by the All-Wales Medicines Strategy Group to cut down on wasted medicines. The Group in February recommended a 28-day repeat prescribing interval was “broadly recommended”, but said, “discretion should be used for individual patients or medicines”. Ms Parrott has raised the question of the new requirement in the Welsh Assembly pointing out that people taking time off work every month to collect their medication could compromise confidentiality. Home delivery is an option but is unsuitable for some patients, say activists. In reply, Welsh Health Minister, Mark Drayford said that the drugs were expensive and there was “a substantial risk of waste” if prescribed for longer than the 28 days. “However, when a patient is stable and does not need to be seen for clinical reasons, wider ways of getting medication... should be available,” he told The Assembly. The change is currently in place in the Cardiff and Vale districts. Other Welsh regions remain allowed to prescribe for 3-, 6- and 12 month periods. An e-petition was opened on the National Assembly website calling on the Health Minister to act on the issue. There have been reports in the Welsh press of Cardiff patients, making a 300-mile round-trip to London to obtain a six-month course of treatment, rather than enter into the 28-day regimen in Cardiff’s University of Wales Hospital in Heath, which would require explanations at work. One patient on Wales Online said, “either you are forced to opt for home delivery or you pick up the medication every single month. The problem is that the hospital pharmacy is only open three times a week from 8.30am-3pm.” If you find the prescription policy changing at your clinic let us know at BASELINE magazine at editor@baseline-hiv.co.uk
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Summer 2013
Join NAT’s HIV Activists Network A virtual group of people - passionate about the rights of people living with HIV in the UK.
• Choose from a range of e-campaigns focussing on different issues • Tell us about the issues in your area for targeted local campaigning • In less than 10 minutes each month, you can influence change, stay informed and make a difference Find out more about the network, current campaigns and sign up online at:
www.lifewithHIV.org.uk
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news: Global
Europe HIV Gains ‘At Risk’ - Greek Rates Spike One-in-Four in Zimbabwean Jails are HIV Positive
The HIV rate in Zimbabwe prisons stands at 27% according to local health officials. 39% of women in the prison system are HIV positive, they say. The national HIV rate in the general population was 15% in 2010 - down from 18% in 2006. There are plans for prison workers to be educated about HIV and work with the ministry of health to start providing antiretroviral drugs in prisons.
Cambodia Reversing its HIV Epidemic Cambodia is on-track to become one of the few countries to successfully reverse its HIV epidemic say the World Health Organisation (WHO). In 1998 HIV prevalence rates were 1.7% among 15-50 year olds. In 2012 this had reduced to 0.7%. New diagnoses dropped from 2,100 in 2009 to 1,000 in 2011. The goal say, the WHO, is to eliminate new infections by 2020 if foreign donors do not cut vital funding to work with expectant mothers, sex workers and enable access to antiretroviral drugs. 14
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The deep cuts in Greek government spending, including healthcare, have led to the demise of essential services for Greek citizens and has led to a spike in new HIV diagnoses among people who inject drugs. There were 10-15 new cases of HIV transmitted through shared needle use between 2007 and 2010. In 2011 this had climbed to 256 cases and in 2012 over 550 new diagnoses were made. An article in The Lancet, on the healthcare crisis in Southern Europe following budget cuts, says that Spain and Portugal could see the same effect if their cuts are as deep. Other countries such as the UK may see hard won progress in HIV prevention eroded as public health funding is put under pressure. In Greece malaria is on the rise as authorities have had no money to spray insecticide against mosquitoes. The rise in HIV was due to needle exchange programmes running out of clean syringes for intravenous drug users. A user in Greece needs 200 clean needles a year, “now they’re only getting three a year each” says the article’s author David Stuckler. It is thought that the consequences of the cuts will be more apparent several years after they come into effect. +++-
Summer 2013
Chris O’Connor
Baby Achieves ‘Functional Cure’ of HIV
HPV vaccine for boys? Following a national programme vaccinating girls in Australia against Human Papilloma virus (HPV), as prevention against cervical cancer and genital warts, the Australian government have begun a publicly funded HPV vaccination programme for 12-14 year old boys. Gardasil, which protects against the widest range of HPV strains, costs US$360 for the required three doses, just a few years ago, and is now down to below $13* There’s been a decline in the proportion of men under 21 presenting with genital warts from 12% in 2007 to 2% in 2011 following the introduction of the vaccine. The reason for this reduction is that when given to young girls the vaccine provides ‘herd immunity’; that is, it provides some protection for the sexual partners of girls; typically young, straight men. But there have been rises in mouth, anal and penile cancers in men. “Countries should carefully explore whether it is economically feasible to vaccinate young men,” says an editorial in the BMJ by Dr.Simon Barton and Dr. Colm O’Mahoney. *GAVI Alliance, has negotiated with HPV vaccine makers, Merck and GSK who have agreed to reduce their prices to $4.50 and $4.60 respectively. The previous lowest public sector price was $13. www.baseline-hiv.co.uk
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In 2010 an expectant mother, unaware she was living with HIV, rushed to her local medical centre in rural Mississippi and gave birth to a baby girl who tested positive for HIV. Two and a half years later in March this year, after a ten-month break from medication, (following the woman and baby disappearing from care) it was revealed that no HIV virus could be found in the child. The ‘Mississippi baby’ was reborn as proof of a ‘functional cure’ for HIV, and she whipped up a media storm, with the functional aspect of the ‘cure’ swept away and leaving in its wake inflated expectation, some scepticism and more than a little confusion. Whilst it is agreed that talk in absolutes around cure is premature. The case has raised debate about the stage of HIV infection the baby had before it received ARVs 30 hours after birth? Where does this case fit into the journey of HIV infection from infection site, to replicating virus to establishment in reservoirs? Some have put forward the idea that this baby would have grown up to be an elite controller- someone who can control HIV for extended periods without treatment. ‘It’s a single case, and in medicine you’ve got to be really careful on a single case’ says Anthony Fauci, Director of the US AIDS Institute adding that guidelines on treating early infants may be revisited. Deborah Persaud whose case study this is said the Mississippi baby, like the Berlin patient, Timothy Brown, could be a rare individual that informs knowledge and raises the bar for science. Professor Jane Anderson, Consultant at Homerton University Hospital in London, expressed caution, ‘this is a very exciting moment, but it is not the answer in today’s world. I’m worried that we so desperately want a cure that we forget the cost-effective stuff that does make a difference. Nearly every case of mother-to-child transmission can be prevented by drugs, caesarean section and not breastfeeding.’ ++
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BASELINE’s Patient Involvement Survey: What You Told Us The survey was supported by pharmaceutical company MSD and market research company Kantar Health UK who helped us refine our questions, hosted the survey and provided us with a vast array of excel spreadsheets of the data. MSD covered the costs of the survey and had a chance to review the questions.
If you are living with HIV, the chances are you are going to be surveyed quite regularly over the next few years. HIV clinics are likely to want to assess your satisfaction with the services they provide you; it’s an auditable target laid out in the British HIV Association’s new Standards of Care for People Living with HIV. As BASELINE went to press, Sigma Research released the findings of its survey My Care, I Care, which evaluated what people with HIV value about NHS HIV services in London. It’s a mammoth project and we’ll be reporting the key findings in the next issue. At the end of February 2013, in the run up to the monumental changes that occurred in the NHS on April 1, BASELINE ran a survey for people living with HIV, currently taking antiretroviral therapy to take a snapshot of how involved people are in their care and look at the impact treatments have on people’s day-to-day lives. The survey was supported by pharmaceutical company MSD and market research company Kantar Health UK who helped us refine our questions, hosted the survey and provided us with a vast array of excel spreadsheets of the data. MSD covered the costs of the survey and had a chance to review the questions. An early analysis of the survey was presented at this year’s British HIV Association Conference in Manchester in April. The survey ran for 8 weeks. With any internet-based survey, it’s important to reflect on the limitations; the respondents are people with access to the internet, people who are interested enough in HIV to read BASELINE and whose English was good enough to understand the questions. As such they can’t be considered 16
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representative of everyone living with HIV in the UK. The response rate among women was low, despite the survey being promoted across women with HIV networks. That said, some of the issues raised around the way HIV impacts upon your personal, sexual and work life have been raised in other surveys such as Sigma Research’s What Do You Need? The continuing role side effects play was highlighted in NAM’s 2009 Treatment Survey, making us more confident that our final results reflect the experiences of the HIV population at large. Who completed the survey? Thank you to the 267 of you who completed the online questionnaire. Similar to many other surveys, almost three quarters (74%) of respondents were male, one quarter were female and 1% transgender. Two thirds (64%) of respondents said they were gay, one quarter (27%) were heterosexual and 7% bisexual. In terms of ethnicity, the survey had a truly global representation; reflecting, perhaps, the diversity of the UK’s epidemic. Two thirds (67%) were white British, 13% were black African, while 6% defined themselves as European. Singular respondents came from places as far flung as Laos and the Middle East. How old were they? The largest proportion of respondents (49%) was aged 36-50 (a similar proportion in this age group are currently receiving HIV treatment in the UK). One third (35%) of respondents were aged 51 or older but only 15% were under 35 years of age.
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Robert Fieldhouse
Where they received their care? 33% of respondents were receiving HIV care in London; to put this in context, in 2011, 42% of people living with HIV received their care in the capital. In addition 17% of respondents received their care in the West Midlands (where we are based) and 13% in the North West, and 6% of respondents in Scotland; (5% of positive people in the UK are currently receiving their care in Scotland). We were very happy with the geographical mix of respondents. 54% of respondents were in some form of work, 19% reported being unable to work and 10% were registered to receive state benefits. 20% of all respondents live on £30,000 or more (the average UK full time wage is £26,664) while 29% live on less than £10,000 per year.
(96%) know theHow names of their are HIVyou medicines. involved
in your HIV Care?
BASELINE is researching how people living with HIV What role do ART sidedecisions effects play? are involved in treatment and whether treatment is tailored to meet your needs. So what about those all-important side effects? Our anonymous online survey will just take 10 minutes of your time. How common are they and, if so, do they have a significant impact on quality of life? Somewhat reassuringly there are some people who said they had not experienced any side effects, but this was around one in 20 of those surveyed (6%). Visit www.baseline-hiv.co.uk/hivcare
This survey was developed by Fieldhouse Consulting Ltd (publisher of BASELINE) & sponsored by a pharmaceutical company.
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‘More than a quarter of people (28%) said they will wait until side effects are limiting or unbearable before raising it with their clinician.’
It’s clear from the survey that side effects remain a critical concern for people living with As you can see, three quarters of respondents HIV. Side effects are a key reason people switch had been diagnosed 5 years or more, with more ART. And for 38% of people in the survey, a than half of all respondents (57%) having taken combination with minimal side effects was therapy for 5 years or more. One in ten respondents deemed the most important issue when choosing had taken antiretroviral therapy (ART) for less than ART. One quarter (24%) were concerned that their 12 months. medication had minimal long-term impact on The overwhelming majority of respondents their body. Somewhat surprisingly only 17% of people felt that the possibility to take medicine once a day Length of HIV diagnosis and antiretoviral therapy (ART) use was the most important issue. <12 months 1-4 years 5years+ Length of diagnosis
4%
21%
75%
Length on time on ART
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33%
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Length of time on current ART 22%
51%
27%
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Which ART side effects are most common? Almost two thirds of people (61%) report sleeping disorders, just over half (52%) reported fatigue or anaemia, 49% reported gastro-intestinal 17
side effects, 48% reported depression and 35% reported anxiety. In total 42% had raised the issue of side effects with their clinician in the past 12 months but in half of cases (54%) the treatment was not changed. What really surprised us is that slightly more than a quarter of people (28%) said they will wait until side effects are limiting or unbearable before raising it with their clinician. We donâ&#x20AC;&#x2122;t believe anyone should put up with ongoing side effects from medication, if an alternative option is available, but understand that it can be difficult for some people to have the confidence to raise issues such as this with the clinic. How do ART side effects impact someoneâ&#x20AC;&#x2122;s life? We asked respondents to rate how side effects impacted upon various aspects of their life; rating from not at all to completely. 40% of respondents said that the medicines they take majorly or completely impact upon their sex life, while work and personal life is impacted to the same extent for around one in three (31% and 29% respectively). Social life is impacted by the same extent for nearly a quarter of respondents (24%). Around 10% said there was no impact on these various areas of life. But remember 6% reported they have not experienced any drug side effects. Management of specific side effects We asked people how specific side effects; namely low bone density, blood fat problems and depression had been managed. We did this because we believe that, increasingly, these issues may be managed by GPs. Letâ&#x20AC;&#x2122;s take blood fats first; we found that 30% of respondents who had experienced blood fat elevations had been referred to a GP, 16% had changed their HIV medication and 55% had been 18
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prescribed a medication such as a statin. A smaller proportion of people diagnosed with depression were prescribed an antidepressant (22%), while 16% changed their HIV medicines due to it and 27% were referred for counseling. One in three people (30%) were referred to another specialist after developing reduced bone mineral density, with only one in five (18%) being referred to a GP. Missed ART doses Overall 34% of respondents had missed a dose in the past month. Women were more likely to report a missed dose (42%) than men (31%). The major reason for missing a dose (for 59% of respondents) was simply forgetting, for one in five (20%) it was being away from home or side effects of medication (19%). ART breaks One in five people (19%) reported ever having taken a treatment interruption. Of those, a quarter (27%) remained off treatment for one year or more with the support of their nurse or doctor, while over half of people (54%) had stopped their break and were back on treatment within 13 weeks. Switching ART Approximately one in three people (29%) had switched therapy in the past 12 months. There were some regional variations; 38% of people living receiving care in the South East had switched therapy in the past 12 months compared with 22% of people in London. In 95% of people the switch was made in partnership with their clinician. Involvement Involvement means different things to different people, but to us it means to be engaged and active in your care. We think someone who is engaged listens, responds, thinks for themselves asks questions and responds to new information.
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Robert Fieldhouse
We all have the right to set the level of involvement that’s appropriate for us, but involvement requires a certain level confidence and we believe peer support is a useful tool to ensure you are able to engage to the fullest in your healthcare.
‘Three quarters of respondents (72%) report being involved ‘completely’ or ‘to a major extent’ in the management of their HIV.’ Patient Involvement: in the selection of the initial ART combination In total 27% of women and 20% of men reported excellent involvement in the selection of their initial ART regimen. In total 29% felt their involvement had been poor; 49% of respondents from the North West felt their involvement at this critical point had been poor, compared with 19% of respondents from London. How involved do people feel in their care? Overall three quarters of respondents (72%) report being involved ‘completely’ or ‘to a major extent’ in the management of their HIV. One in ten (9%) report very little involvement. We found 39% of men reported complete involvement, and 28% of female respondents. A higher proportion of gay men (42%) reported complete involvement, compared with 26% of heterosexuals. In total 80% of Brighton respondents reported complete involvement in their care, compared with 20% from the West Midlands. Who wants more involvement? One third (34%) of respondents said they wanted more involvement in their care, while 64% said they wanted the same. Regionally half of patients (51%) in the West Midlands said they wanted more involvement in their care, compared www.baseline-hiv.co.uk
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with 14% in the North East. We found a higher proportion of women (46%) than men (30%) wanted more involvement in their care. And in the clinic? Half of respondents (47%) felt they had an excellent relationship with their clinic and a similar proportion (45%) reported being excellently prepared for their clinical appointment. Two thirds (64%) reported their experience of their doctor’s non-judgmental attitude to them as excellent but one in ten (11%) felt their doctor’s ability to explain the importance of adherence was poor or fair, and the same proportion of respondents (11%) felt their doctor’s explanation of side effects had been poor. Finally We weren’t surprised to find such high levels of involvement among the people living with HIV who responded to the survey. We think there is a great opportunity for clinics to work with voluntary sector organisations to provide opportunities for engagement for the people who want it. We believe opportunities always exist to raise the bar, making people better engaged and more satisfied with their care. We look forward to seeing the results of the upcoming surveys and see how the findings compare with our own. We’d like to thank the respondents, the people who helped publicise the survey, MSD for sponsorship and Kantar Health UK for help developing the survey. A more detailed analysis of the survey will be available on our website www.baseline-hiv.co.uk this month. The survey was supported by pharmaceutical company MSD and market research company Kantar Health UK who helped us refine our questions, hosted the survey and provided us with a vast array of excel spreadsheets of the data. MSD covered the costs of the survey and had a chance to review the questions.
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Once Was Not Enough…
West End Newcomers Take Top Two Awards At West End Eurovision 2013
Theatre fans, show stars and a host of celebrities came out in force to support the sixth annual installment of The Make A Difference Trust’s firmly established carnival of camp, West End Eurovision. TheatreMAD, one of the charity’s producing brands, this year threw a star studded bash which counted Graham Norton and Marcus Brigstock amongst the ardent musical lovers who came together to watch the casts of BILLY ELLIOT, A CHORUS LINE, MAMMA MIA!, ONCE, THE PHANTOM OF THE OPERA, ROCK OF AGES, SPAMALOT, TOP HAT, VIVA FOREVER AND WICKED battle it out to be crowned the evening’s overall victor whilst raising money for the charity, and the comprehensive programme of help and support it offers to those with HIV and AIDS in the theatrical industries. With the support of a panel of celebrity judges including Russell Grant, Lisa Riley, Jodie Prenger and Rylan Clarke, Richard Gauntlett introduced 20
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the evening’s events, helped in turn by Euro loving guest hosts Sinitta, Christopher Biggins, Ben Richards and Gok Wan. Fighting off fierce competition - which spanned both the decades, and the continents – including Top Hat’s visually stunning performance of Germany’s 1979 Genghis Khan, and Spamalot’s rendition of Portugal’s 1981 entry Playback (which somehow concluded with the ever-lusciouslocked and flexible-of-form Bonny Langford performing the splits…) it was newcomers Once that stole both the points and the show. Their first scoop was the Creative Input Award sponsored by Capezio for their realization of Dana’s 1970 entry for Ireland - All Kinds of Everything. Witty, irreverent and intimate, their number boasted all the qualities that has seen the show win a haul of awards Stateside - including seven Tony Awards – and now also counts West End Eurovison’s Overall Winner Title too. Boasting a rousing live Celtic conclusion, Once became the
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Photos: Stephen Smith (Life in Living Color) first act to ever perform their own support music live at the event. But creative endeavour was also commended elsewhere as the audience awarded a full douze points to the cast of Phantom of the Opera who claimed the publically voted iDent Award, sponsored by Sonic Pond. After splits and songs, leather and lycra, it was time to gift the trophy to Volunteer of the Year, sponsored by West End Wilma. In 2013, this particular honour was jointly awarded to longstanding supporters of The Make A Difference Trust Diana Hickman and Melissa Holston who have been on hand to shake buckets and stuff envelopes since the charities earlier incarnation, West End Cares. Together they have contributed some 40 years of voluntary assistance to the charity. The Make A Difference Trust’s Chair, David Pendlebury commented, “It’s people like Diana and Melissa that allow us as a charity to Make a www.baseline-hiv.co.uk
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Difference. They are at the very heart of what we do, the backbone of our organisation” After those words of recognition it was left to genuine Eurovision entrant, Katrina of Katrina and the Waves to bring the audience to their feet with a belting performance of both the UK’s last winning Eurovision entry, Love Shine A Light and iconic 80’s smash hit Walking on Sunshine as she brought the night to a close in an appropriately euphoric Eurovision style. Chairman David Pendlebury concluded: “With this year’s raised funds still being counted, we take this opportunity to thank all who made our sixth year possible. The many hours of voluntary work dedicated by our staff, the Dominion theatre and its technical staff, all our sponsors, judges, hosts, show panel and dedication of tonight’s audience members. None of this is possible without you. Here’s to 2014!” ++
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© Charly Herscovici, with his kind authorization c/o SABAM-ADAGP, 2012
14th EUROPEAN AIDS CONFERENCE OCTOBER 16 - 19, 2013 BRUSSELS · BELGIUM Conference Organiser European AIDS Clinical Society (EACS) Hôpital Pitié-Salpêtrière · Pavillon Laveran EACS Office 47, boulevard de l’Hôpital 75651 Paris Cédex 13 · France Phone: +33-1-44241796 Email: info@eacsparis.org www.europeanaidsclinicalsociety.org
Conference Secretariat EACS Conference Secretariat c/o K.I.T. Group GmbH Association & Conference Management Kurfürstendamm 71 · 10709 Berlin · Germany Phone: +49-30-24603-0 Fax: +49-30-24603-200 Email: info@eacs-conference2013.com www.kit-group.org
Conference Co-Chairs Nathan Clumeck Manuel Battegay (EACS President – elect)
Conference Venue SQUARE - BRUSSELS MEETING CENTRE Glass Entrance Rue Mont des Arts 1000 Brussels Belgium www.square-brussels.com
WWW.EACS-CONFERENCE2013.COM
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London Needs Gay Friendly Drug Services NAT’s Director of Policy Yusef Azad discusses the latest trends in party drug use. Rates of HIV amongst injecting drug users have traditionally been low in the UK as harm reduction methods and HIV prevention work have been largely successful and have kept the prevalence of HIV amongst injecting drug users at only 1%.
‘HIV Prevention England has decided to focus some work on the issue of gay men, drug use and sexual risk.’ However things are changing, with evidence that injecting drug use, or ‘slamming’, amongst gay and bisexual men is on the increase. The types of drugs being taken by gay and bisexual men are not the ‘traditionally injected drugs’ – heroin or crack cocaine - but newer drugs, crystal methamphetamine (‘crystal meth’) and mephedrone. There has also been a sharp rise in the use of GHB/GBL, which is not injected. What do these drugs do? Crystal meth is highly addictive. It is a stimulant that affects the central nervous system, releasing excessive levels of dopamine, increasing energy, feelings of confidence and sex drive. Meth addiction can lead to erratic, violent behaviour, mood swings, decreased physical health and even cardiac arrest. Mephedrone is regarded as having an effect similar to ecstasy and cocaine. Mephedrone users can be euphoric with increased energy, confidence and social ability. GBH and GBL produce a feeling of euphoria and can reduce inhibitions however they both need to be taken in carefully measured doses and 24
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at specific intervals or overdoes can occur. Addiction to the drugs can also cause difficult and dangerous withdrawals, which might need to be medically supervised. On the gay scene these three drugs are often used to facilitate sex and, particularly when injected, have become one of the most pressing issues for gay men’s health. NAT hosted a roundtable, on HIV and injecting drug use at City Hall in January and this change in gay men’s drug use was one of the main issues discussed. We brought together experts in the field to share what they have found happening in their services. At the roundtable people from drug clinics across London reported not only more injecting drug use amongst the gay men they see but an increase in sharing injecting equipment and the taking of drugs in the context of prolonged highrisk sexual behaviour. The evident risks for HIV and hepatitis C transmission of these new practices are worrying. Antidote, the one dedicated LGBT drug support service in the capital, reported that 75% of the men using Antidote’s services are HIV positive and 90% of them attribute their HIV (or hepatitis C) diagnosis to drug or alcohol use. They also found 60% of HIV positive men report failing to adhere to their HIV treatment when under the influence of drugs. The majority of HIV negative service users reported at least one course of PEP in the last year. Most service users report between 5 and 10 sexual partners per drug-using episode.
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year, compared with just 3% in 2005. 63% of presentations to Antidote were referrals from sexual health clinics in 2012 – compared to 8% in 2005. This is a sign of how interconnected sexual health risk and problematic drug use are. 80% of crystal meth and mephedrone users were injecting in a sexual context in 2012 (up from 20% in 2011) - and 70% of those who were injecting reported having shared needles. There are also other sources of evidence: NTA data show that meth users are older than other club drug users – 42% in their thirties and 28% in their forties or older. The 2007 Gay Men’s Sex Survey found that methamphetamine use was twice as high in London (7.8% rather than 4.7%) and that 19.5% of HIV-positive Londoners reported using the drug.
Whilst the absolute numbers of gay men seeking help for problematic use of these three drugs are significant and have massively increased over the past few years, it is hard to know how widespread the issue is. Are those seeking care just the ‘tip of the iceberg’, or a large percentage of those using these drugs? Is the problem still mainly confined to London or is it happening elsewhere but going unrecorded because of the absence of specialised services? But even from the above data the scale of the health challenge is clear. However, if you are a gay man experiencing these kinds of problems there are only three places in London you could get specialised and expert help, Antidote and the two clinics which specialise in drug-related needs of gay men, the Club Drug Clinic and 56 Dean Street. All report being highly over-subscribed. Feedback from gay men using these drugs is they often feel generic drug treatment services did not understand their needs (for example providing them with inappropriate injecting equipment) and staff seemed uncomfortable with the sexual www.baseline-hiv.co.uk
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context of the drug use. Given this background, NAT has called on London Councils to commission substance misuse services for gay men, ensuring they are open access, appropriate and tailored. In addition, we need commissioning policy to focus on: Developing the skills and capacity of sexual health clinics to ask gay men systematically and on an ongoing basis about drug and alcohol use. Enabling ‘traditional’ drug treatment services to respond sensitively and in a clinically appropriate way to the needs of gay men. Ensuring these specialised drug services for gay men are adequately funded to meet demand.
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London Councils have responded positively and are considering these issues within their needs assessment of HIV prevention in London. NAT will be producing a policy report on HIV and injecting drug use in the near future, but the minutes and presentations from the roundtable are already on the NAT website. There have been some very encouraging policy developments arising directly from the discussions at the roundtable: NICE, Public Health England and the National Needle Exchange Forum have begun a survey of provision of needle and syringe programmes in England (the last one was in 2006). HIV Prevention England has decided to focus some work on the issue of gay men, drug use and sexual risk, calling a further meeting on the back of NAT’s roundtable to explore the issues in more detail. Public Health England have established a ‘National Intelligence Network on the health harms associated with drug use’ which will ensure some national focus on reducing drugrelated deaths and the transmission of HIV, hepatitis C and hepatitis B.
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Isaac Samuels
Listening to The Voice Inside I’ve lived with HIV for a number of years. I considered myself to be a well-informed person before my diagnosis, but I soon realised that like many, my focus was on the medical model, failing to take into account the person behind the label.
‘Talking about mental health has helped me get the right support.’ I began to understand the need to look at the whole person including our mental wellbeing as a result of experiencing some mental health problems. I took the decision to stop and listen to the voice inside myself that was quietly reinforcing the negative, stigmatising messages, which were affecting my mental health and psychological wellbeing. At my lowest point I had no aspiration and was unable to function on a daily basis. However I had that eureka moment one day and decided it was pointless to not address me as Isaac who happens to live with HIV and who needs support for his mental wellbeing. I needed to start with trying to understand who am I? This was difficult. I’ve had to address, what do I want in my life and how am I going to get there? How could I stop the pain of being depressed? The starting point was first talking openly about my depression. Like HIV, mental health sometimes can be a taboo subject and just talking about it can, for some people, be very 26
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hard. However, I took the viewpoint that I needed help from someone outside my personal life and decided to seek professional help, which I must admit was one of the most challenging but rewarding processes. How could I have not considered this before? I started working with a psychologist and I was unsure at first why I kept going back even though I found the sessions hard and I would come away at times with more questions than answers. The psychological input came from a process that gave me the safe space to be the expert in my life and to feel able to be OK with me. This process enabled me, over time, to be able to establish who I was and how living with both HIV and mental health issues was normal and the realization that the more I was unable to talk openly about it the more I was doing myself a disservice and not breaking the cycle of fear that can exist with mental health and HIV. I now have created a support network that has people who understand the challenges of living with these conditions. I have a wonderful relationship with my hospital doctor and nurse and it’s like going to see friend for a good old catch-up when I pop in for my HIV MOT. Moreover, this is my life and I am able to state what I need. Like HIV, mental ill health does not discriminate and talking about mental health has not only helped me manage my life but has enabled me to get the right support for both my HIV and mental health needs.
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focusing on: - healthy eating for babies, toddlers and kids with hiV
- Dietary basics with Clare stradling, hiV dietitian
- a trip to the market on ÂŁ35 - what is the portfolio diet? - back to basics with quick Available at
and simple whole foods
- the food Chainâ&#x20AC;&#x2122;s services - healthy living advice from waverley Care, edinburgh
- Come (hiV) dine with me
8 s hort fi l ms a b o u t e at i n g well with hiV This project is produced by BASELINE and supported by ViiV Healthcare. Printing provided by ViiV Healthcare.
Stribild Speaking
Gilead’s new blockbuster 4-in-1 HIV single tablet regimen based on Truvada plus a boosted integrase inhibitor (elvitegravir) has just been approved in the European Union. Robert Fieldhouse speaks with Harvard’s Dr Cal Cohen, a lead investigator in the key Stribild clinical trials. Having tried and tested Stribild in research and the clinic, what’s your take on this new medicine? ‘In the patients that I have used Stribild in, both by prescription and well as in the research that was done before, I think the best way to describe it is its basic simplicity. All we ask the patient to do is take this pill at some point in the day with something to eat and not much else.
‘I think there were patients in whom Atripla was used but it wasn’t the appropriate choice.’ In the Phase 3 trials Stribild maintained efficacy at the same rate, with fewer side effects, compared with two of our most prescribed initial options – Atripla and Truvada with boosted atazanavir (Reyataz). And that seems to be exactly we want. We want preserved efficacy and we hope for fewer side effects. It doesn’t mean there was 100 per cent success. There are always people who don’t take their pills correctly, or for whatever reason will have rebound viraemia, but at least in these trials in which there were 700 or so people who took Stribild only about two per cent developed any 28
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drug resistance after two years. And importantly, all of them can move onto whatever the current favourite protease inhibitor is with appropriate additional active antivirals to re-establish virologic suppression. In sum, nearly all who started on Stribild had a viral load that was below detection with fewer side effects than what was our other single tablet regimen gold standard, which was Atripla.’ What about the side effects? ‘From a subjective toxicity point of view there really is very little to expect. In fact, based on the two large studies that were done, the side effects appear to be the same or less likely than the two standard comparison treatments (Atripla and atazanavir/ritonavir), maybe with one exceptionabout one per cent more headache). Nobody stopped because of the headache though; it’s a mild headache.’ How is it taken? ‘It’s pretty easy if you can tell somebody you can take this pill and you don’t have to do the Atripla caution: “You might have dreams and so on,” and unlike with Eviplera you don’t have to talk about the size of or the calories needed for the meal. With Stribild people also get the emotional reward of watching the viral load go from something to way close to undetectable in often as little as just a month because of the rapid drop associated with integrase inhibitors.’
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Could it topple Atripla? ‘Efavirenz [a component of Atripla] has been our gold standard; it earned that status. There have been lots of studies of efavirenz versus something else and efavirenz did better, better mainly in terms of efficacy; getting that viral load down and keeping it there. In a head-to-head trial against the boosted protease inhibitor (PI) lopinavir (Kaletra), it surprised many of us, myself included, that it outfoxed it. Lopinavir at the time was our gold standard protease inhibitor. So it earned the position it is in. So the question is then, “Is this the best we can do, or can we do better?”’ It is possible that as clinicians use Stribild in the right patient population, it will earn the stature currently held by Atripla. Integrase inhbitors vs boosted PIs. How do they compare? ‘The only class of drugs we can use with the lowest rates of resistance after virologic failure is the boosted protease inhibitor (PI) class. We can use them first and some clinicians like PIs for that. But it means we can also use them second because if you haven’t used PIs before, you still have a fully active protease inhibitor. Boosted PIs are remarkable drugs, they will maintain suppression even if people have taken and experienced www.baseline-hiv.co.uk
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failure with something else before. With Stribild, clinicians now have choice. In the old days we would run out of treatment options. The reason we ran out of treatments is that we did not know how to prevent the development of resistance, so we saw resistance develop to this class and that class. With the PIs we now have a class of drugs in which resistance is very rare, meaning that theoretically, a patient with HIV should have a fully active drug or drug class for the rest of their life, which is extraordinary because it is so different to where we were just 8 years ago. And then the question is: “When do I play the card, do I play it first, or do I save it for later?”’ What does current prescribing practice for starting therapy look like? ‘If we take a look at current prescribing practice, is everyone going on the same regimen? The answer is no. There are clinicians starting people on A, B or C; some will go on Atripla, some will go on boosted PIs. Clearly clinicians have identified, for whatever reason, a group of patients for whom they feel that Atripla is not the right place to start. So if that is the case, what is the right alternative? Are current boosted PIs the right choice?’ Are co-formulated medicines really that important? Say we have a regimen of two nucleosides, ritonavir and a PI. Pretend for a moment that a company announced that we have just figured 30
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out away to co-formulate that into a single tablet, would you rather use that or use the multitablet regimen? Who prefers the multiple tablet regimen?
‘There are clearly people in whom Stribild would be a better choice.’ At least in the States, most people say that’s obvious, if you have something co-formulated I’d rather do that than separate tablets; it offers convenience, it avoids error and some people really care about pill burden, other people don’t care about it as much, but it’s still a nice thing to have. Whatever the passion level is most people say, “sure.” Very few people say: “You know what, I’d much rather have three pills a day because it feels like you are depriving me of something that I need.” The thing is we don’t have a single tablet based on a boosted PI but we do have a single tablet based on a boosted integrase inhibitor (Stribild). If we have the data, and we do, to show that it is as good as a boosted PI in many important aspects, then what do we do with it? In the right patient in whom this regimen should work well, in a patient in whom I’d have previously picked a boosted PI it is an absolute consideration.’ But it can’t be the right choice for all? ‘Absolutely. For example, I’d rather use my boosted PI if the patient has transmitted drug resistance to nucleosides. This should not be a +++-
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choice if they have renal [kidney] dysfunction as it’s not been studied in that population. So it’s not the right choice for everybody. It is right for some. I think there were also patients in whom Atripla was used but it wasn’t the appropriate choice. If someone has a history of depression efavirenzrelated toxicity is an unwelcome burden.
‘It is possible that as clinicians use Stribild in the right patient population, it will earn the stature currently held by Atripla.’ We can identify a series of patients for whom Stribild is an innovation that fits the need that they have and that is what medicine is about; to provide innovative medicines that people need for the rest of their lives. Then we do the battle of what’s the best use of resources in a global economy. But at least we can identify the need. There are clearly people in whom Stribild would be a better choice. Then the question is: “What is the value of that need and how much do we want to value that?” That’s the question that all healthcare systems around the globe, including my own, are currently debating. And that’s an important discussion. But I’ve no doubt we can identify a need and in some patients the need is cost neutral or even lower given the relative cost of boosted PI regimens. And in some there may be advantages to choosing this. I think it is an important discussion to have outside the office but hopefully when we are in the patient office clinicians won’t www.baseline-hiv.co.uk
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have to say: “You know what this would be a good choice for you but it’s way too expensive for you. I can’t give you that. I’d much rather give you this less costly one, it’s not ideal, but it’ll do.” That’s hopefully not a conversation clinicians are being asked to have because we are not trained to have that kind of conversation. People have historically had to put up with side effects or chosen to put up with side effects because of the simplicity of the regimen. As we find innovation that doesn’t have those trade offs we need to decide how to best make those available.’ Is it important that innovations in HIV medicine continue, particularly as we are a growing ageing population? ‘Absolutely. At no point do any of us doing HIV medicine feel like we have the perfect combination of medicines that’s right for everyone, for which there isn’t some trade off. The good news these regimens save people’s lives. But now we want to do it well. We went through the era of lipoatrophy [fat loss]. Now we can say I’m far less worried about the onset of lipoatrophy with current meds. But in the longterm what are the bone toxicities, what are the cumulative renal toxicities? Everyone is listening, as are the chemists who are in charge of finding the molecules to fit the needs. And the good news is we do see a small but important pipeline of molecules that the chemists are saying: “I think this might be better.” It’s so heartening to our field to see hope.’ ++
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PIMA™: Rapid CD4 test reduces time in clinic and eliminates recalls
For anyone newly diagnosed or living with HIV, CD4 counts help to determine how strong your immune system is, indicating the stage of your HIV disease, guiding treatment and predicting how your disease might progress. Keeping your CD4 count high can reduce complications from HIV disease and extend your life and is therefore monitored regularly.
‘The point of care approach means fewer clinic visits, saving money on travel costs and lost work time.’ In the UK, CD4 tests are usually performed in the laboratory, which means that you need to revisit the clinic for your result, but a rapid test (Alere Pima™) that gives immediate results in the clinic is now available. Research presented at the recent 19th Conference of the British HIV Association in Manchester shows that the new Alere Pima™ CD4 test can reduce the number of clinic visits, reduce the time in clinic, and scores highly in terms of staff and patient satisfaction. Researchers at Imperial College London compared the experiences of patients and staff using both lab-based and rapid CD4 tests, assessing the impact on patient pathways, patient satisfaction and staff experience. They also considered the cost-effectiveness of the rapid test from both the clinic and the patient’s perspective - particularly in terms of less time lost from work. 32
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In total 199 people living with HIV were recruited to the study - 43 were recently diagnosed HIV positive and the remaining 156 had stable CD4 cell counts over 350. The Alere Pima™ demonstrated a significant impact on the patient experience, reducing the time in clinic for all patients and by 70 minutes for new patients. The ‘on-the-spot’ CD4 counts also eliminated the need for recall visits to the clinic for results. More than 80% of participants gave the rapid test the maximum satisfaction score (a significant increase over lab testing) and lower levels of anxiety were reported, particularly amongst the newly diagnosed. From the staff perspective, almost 90% agreed that the Alere Pima™ test was easy to perform and had assisted in the clinical management of patients. 60% also felt that the rapid test had helped to improve communication with patients about their care. In financial terms, the point of care approach means fewer clinic visits, saving money on travel costs and lost work time. And whilst the annual clinical cost of the Alere Pima™ point of care pathway is higher than laboratory testing, when patients’ cost savings were included, it actually saved £12.02 per patient, leading the researchers to conclude that it is highly cost-effective. This article was supported by Alere www.alere.co.uk ++
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Optimising HIV diagnosis and management Our aim at Alere is to improve the diagnosis and management of people with HIV by delivering critical lab quality results in the clinic or community.
Š 2012 Alere. All rights reserved. All trademarks referenced are trademarks of their respective owners. REF020-SH-010/02/12 SC
alere.co.uk
Andy Bell Rocks NAT’s Spring Awakening Fundraiser Erasure’s Andy Bell had the crowds up and dancing at NAT’s Spring Awakening fundraiser recently, playing an acoustic set of classic hits such as ‘A Little Respect’ and ‘Blue Savannah’. Hosts Christopher Biggins and Su Pollard kept things lively on stage starting a bidding war for the auction with guests competing to win prizes such as dinner for 10 at Michelin stared restaurant Gauthier in Soho, a trip to watch the Today Programme being recording followed by champagne brunch with Evan Davis and a Howard Hodgkin art work. They also auctioned a surprise lot of Champagne tea for four with them, which went down a storm. Guests sipped on an exclusive cocktail created for the night from one of the world’s best mixologists, Simon Difford and sampled renowned City of London caterers Chester Boyd’s canapés including radishes and asparagus in soil, gazapacho mousse and Hampshire strawberry marshmallows with basil jelly. Held at the glamorous Haberdashers’ Hall in Smithfield, every penny spent on the night will go towards funding NAT’s work campaigning for a better deal for people living with HIV and educating the public about how to protect themselves and others from HIV. Su Pollard told BASELINE: “I was delighted to be asked to come along tonight. A friend of mine got HIV at the age of 16, It was actually his first sexual experience so he was really unlucky. But now he is 40 – which goes to show it’s not a death sentence – and why it is so important to support HIV charities like NAT.” Andy Bell said: “It feels like this is the least I can do. I have always had brilliant HIV care so I feel very lucky, and also lucky to be alive. You go down to the clinic at the hospital and you see a lot of people who are clearly having a hard time and I think really this is the least I can do, sing a few songs.”
Robert Fieldhouse
news: Treatment MK-1439 Moving Forwards in Clinical Trials
An investigational next-generation nonnucleoside reverse transcriptase inhibitor (NNRTI), MK-1439, appears to have strong activity and is well tolerated in a small monotherapy (MK-1439 alone) study. Early studies showed that MK-1439 works effectively after failure with resistance to the first generation NNRTIs nevirapine and efavirenz. And as yet, it does not appear to have a high likelihood of central nervous system side effects such as sleeplessness or feeling out of sorts. Trial participants were randomised to receive 25mg or 200mg of MK-1439 or placebo once daily as a monotherapy for 7 days. On completion people were given standard triple combination therapy for 10 more days in order that they did not develop drug resistance to MK-1439 as it fell away in the blood. HIV viral load declines were similar between the two doses (declines were similar in the 25mg and 200mg dose arms; at 1.37 log (25mg dose) and 1.26 log (200mg dose). The drug will next be studied against efavirenz alongside Truvada (tenofovir/emtricitabine). The drug was well tolerated. No skin rashes or central nervous system toxicity was reported. Only three side effects (headache, loss of appetite and night sweats) were considered as potentially associated with the drug.
Increased Risk of Fracture Among PLWHA
People living with HIV/AIDS (PLWHA) are at an increased risk of bone fracture, according to a new analysis of 13 studies, including people with and without HIV and also people co-infected with hepatitis C. Bone mineral density tends to decline during the first couple of years of antiretroviral therapy and then stablises. Additionally use of corticosteroids reduces bone mineral density and increases shortterm fracture risk. But hepatitis C coinfection and low body mass index were the strongest predictor of fracture. Smoking, white race, and older age were consistent predictors for fragility fractures. The increased risk of fracture was approximately 1.5-2 times greater in HIV/HCV co-infected people than in people with HIV alone. It’s important that people over 50, those postmenopause and people with a fracture likely to be due to osteoporosis (hip, wrist, vertebra) get their bone mineral density measured. There’s an online tool doctors can use to calculate risk of fracture www.shef.ac.uk/FRAX/tool.jsp. Treatment options include supplementation with vitamin D and calcium. Drugs from the bisphosphonate family such as alendronate and weight-bearing exercise help too.
New 800mg Darunavir Single Tablet Available
Janssen recently launched an 800mg formulation of its protease inhibitor, darunavir. It’s dosed once daily. The new formulation halves the daily pill burden from two to one tablet. Darunavir is always taken in combination with ritonavir and other HIV medicines together with food. “Reduced pill burdens have an important role to play in increasing adherence to HIV treatment and the prevention of drug resistance and virologic failure,” said Dr Mark Nelson, HIV Service Director, Chelsea and Westminster Hospital. “The efficacy and tolerability of darunavir is well documented so the availability of a more convenient form of the drug will be welcome news in the HIV medical community.” 36
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Support for people living with HIV or Hepatitis C in Scotland From our bases in Edinburgh, Glasgow and Inverness, Waverley Care offers a wide range of support, information and advice across Scotland.
We are here for you –
www.waverleycare.org
Tel: 0131 558 1425
Email: info@waverleycare.org Photo posed by models
Scottish Charity No. SC036500
Robert Fieldhouse
news: Treatment HIV Shedding in Semen Linked to Herpes Viruses
ART protects positive kids hearts
One in ten HIV positive men who have sex with men had detectable HIV in their semen despite having a fully suppressed HIV viral load in blood plasma. Researchers found an association between coinfection with human herpes viruses, cytomegalovirus (CMV) and Epstein-Barr virus (EBV) and an increased likelihood of HIV shedding in semen. The researchers suggested coinfection with these viruses may increase immune activation and inflammation. US researchers attempted to identify the frequency and predictors of HIV shedding in the semen of 114 men on antiretroviral therapy (for an average of 2.4 years) with HIV controlled below 500 copies. The level of HIV and 7 herpes viruses was measured in semen and participants were screened for bacterial sexually transmitted infections (STIs) and non-specific genital inflammation. 11 men (9.6%) had detectable HIV in their semen, at an average level of 125 copies/mL. 72 men (63%) had at least 1 herpes virus in their semen or genital tract; 49% with CMV and 31% with EBV. 15% were found to have asymptomatic urethral bacterial STIs, this was not associated with HIV shedding in semen. There was also no association between HIV in semen and the type of ART or duration of therapy. In men with HIV blood viral load <50 copies/ mL, a high level of CMV in semen (above 1,000 copies) was the only significant predictor of semen HIV shedding. The fact that HIV was detected in semen 6 times more often among men with HIV viral loads in blood of 50 and 500 copies/mL led the researchers to conclude that “completely suppressing HIV in the blood may minimize the risk of sexual transmission.” 38
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Long-term use of antiretroviral therapy (ART) does not impair heart function in children and adolescents who acquired HIV at birth. ART in fact appears to have a “cardioprotective” effect. In the early years of the HIV/AIDS epidemic, before effective treatment, children with HIV had higher rates of heart failure and related problems compared with HIV negative children. But this may no longer be the case in the highly active antiretroviral therapy era. Steven Lipshult and fellow investigators with the Pediatric HIV/AIDS Cohort Study conducted a study to evaluate the cardiac effects of prolonged exposure to HAART among HIV-positive children and adolescents. US researchers analysed the medical records of 325 children who had acquired HIV at birth. All were receiving ART at one of 14 U.S. paediatric HIV clinics. They compared them with 189 HIVexposed but HIV free children, and 70 historical controls from a previous study who had HIV but mostly were not exposed to HAART. “Our results indicate that the current use of combination ART, usually HAART, appears to be cardioprotective in HIV-infected children and adolescents,” they wrote. “This finding is even more relevant in the developing world where the prevalence of HIV disease in children is much higher.”
New Chewable Raltegravir Launched for Kids
The European Commission (EC) has granted marketing authorisation to raltegravir for use in children two years of age and older weighing at least 12 kg, in combination with other antiretrovirals. In addition, doctors now have the option to prescribe raltegravir as a chewable formulation (25mg and 100mg) for HIV positive kids aged 2 to 11 years.
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and mme a r g o ll pr a.org .bhiv he fu w w See t t w ter a regis
ANNOUNCEMENT BHIVA Autumn Conference including CHIVA Parallel Sessions
14–15 November 2013 Queen Elizabeth II Conference Centre · London Introduction BHIVA is delighted to announce its 2013 Autumn Conference, which will be held at the Queen Elizabeth II Conference Centre, located in the heart of Westminster. Dr Annemiek de Ruiter has kindly agreed to serve as the Local Host for this event.
Registration Rates and details can be viewed via the BHIVA website. You can also register online at www.bhiva.org or by using the forms published in the Second Announcement.
Key conference topics: ▶ The resurgent global epidemic in MSM ▶ Microbial translocation ▶ HIV-positive healthcare workers ▶ Safety of antiretrovirals in pregnancy ▶ Findings of joint BASHH/BHIVA HIV partner notification audit ▶ Generic ARVs – what will they mean for patients and HIV services? ▶ Understanding patient beliefs and improving adherence ▶ The science of transmission of HIV via breast milk ▶ Advances in the diagnosis and management of CNS opportunistic infections ▶ BHIVA Interactive Clinical Conundrums
Preceded by
Sixth BHIVA Conference for the Management of HIV/Hepatitis Co-infection Wednesday 13 November 2013
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
www.bhiva.org
Should you keep your life assurance following diagnosis? One of the most regular questions we are asked now at Unusual Risks by the HIV community is whether or not to keep your life insurance following diagnosis? There still seems to be an awful lot of confusion around this issue, especially around the terms and conditions of Life Assurance. In our recent survey we established that 50% of HIV positive people had surrendered a Life Assurance policy as a result of their diagnosis. It has therefore become apparent that people are unaware that if their policy was taken before their diagnosis, they are indeed covered and their policy is still valid. The vast majority of Life Insurance policies are underwritten on the person’s circumstances at the time of the initial application. We recently had a very interesting case recently where we were asked to compare a HIV positive clients existing endowment policy against taking a new HIV Life Assurance policy. Martin told us, “I took my mortgage endowment plan alongside my mortgage way back in the 1990’s, prior to my HIV diagnosis. Due to under performance of the savings element of the plan, I switched the mortgage to a capital repayment many years ago. I had always presumed that I would never get any more Life Assurance due to my HIV diagnosis and even though it is extremely expensive, decided to keep my Endowment policy. I’m wondering if the new HIV Life Assurance policies available would allow me to surrender my endowment plan?” Here’s some advice for those who are thinking about surrendering their Life Assurance following their diagnosis. 40
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The vast majority of Life Assurance polices do in fact cover HIV if the policy holder was negative at the start of the policy. If you bought your insurance in good faith, then you should check the paperwork, maintain your premiums and continue the plan as you would have before your diagnosis.
‘78% of people living with HIV are now aware of HIV Life Assurance, in comparison to only 20% of HIV positive people 12 months ago.’ If you have cancelled your Life Insurance plan in the past as a result of your diagnosis and are now without Life Assurance, there are many new options for taking Life Assurance that include HIV. Many people are now protecting their families and mortgages with HIV Life Assurance. Many HIV positive people like Martin may still have endowment policies from the past that they have elected to keep because they at least wanted some Life Assurance. If you do have an existing endowment it may be worth reviewing your options against the new Life Insurance options that are now available. Our latest research shows that community awareness of HIV Life Assurance and the opportunities available to protect families and mortgages has increased dramatically. 78% of people living with HIV are now aware of HIV Life Assurance, in comparison to only 20% of HIV positive people 12 months ago. This increased awareness is wonderful news for everyone, but along with this increased awareness there comes additional responsibility,
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Chris Morgan to make certain that the HIV community are making the right decision with insurance policies and mortgages. And Martin? We arranged a Life Assurance policy with a sum assured of £150,000 which was the same as the existing endowment plan taken before diagnosis. This meant that he could go ahead and cancel his existing endowment plan in the knowledge that he’s fully covered on his new Life Assurance. The new HIV Life Assurance had a final premium of £91.00 over 10 years. The original endowment had an expensive premium of £141.00 per month, which meant that we saved him £50.00 per month. Martin also received back a small lump sum that had accrued within his endowment plan. Unusual Risks make donations to charities NAM/AIDSMAP and The Hepatitis C Trust
from every Life Assurance and Mortgage we arrange. We have brochures and PDF Fact Sheets now available to charities, support workers and medical professionals. Chris Morgan is the Marketing Manager of Unusual Risks Mortgage & Insurance Services. www.unusualrisks.co.uk, Editor of Positive Finance Magazine www.positivefinance.info and was a consultant to the Association of British Insurers HIV Working Group for over five years. He may be contacted by phone 0845 474 3075 or by Email chris@unusualrisks.co.uk
Unusual Risks Mortgage & Insurance Services The UK’s Leading HIV Life Assurance Specialists
Call us: 0845 474 3075
Web: www.unusualrisks.co.uk e-mail: enquiries@unusualrisks.co.uk AUTHORISED AND REGULATED BY THE FINANCIAL SERVICES AUTHORITY – please note most buy to let mortgage are not regulated by the Financial Services Authority. Think carefully before securing debts against your home. Your home may be repossessed if you do not keep up repayments on your mortgage. Baseline Ad Unusual Risks.indd www.baseline-hiv.co.uk
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Robert Fieldhouse
Positively UK Guidelines on Services for Women
Positively UK Report on HIV and Healthcare in Prison
Positively UK and the Women’s Health and Equality Commission have produced a new set of guidelines for those whose work includes planning and commissioning health and social care services for women living with HIV including Clinical Commissioning Groups, Local Authorities and NHS England. The guidelines look at the needs of women living with HIV and how services should address these. Available at www.positivelyuk.org
Positively UK have recently published a report into the standard of healthcare and support provided to people living with HIV in prison. The review of health care and support provision in prisons identified cases of sub-standard healthcare with people refused HIV medications, denied confidentiality and experiencing discrimination. The report highlights these failings, alongside areas of good practice undertaken by prison healthcare teams, HIV clinics and the voluntary sector, and recommendations that need to be introduced to ensure people living with HIV in prison receive healthcare to quality standards of care. Available at www.positivelyuk.org
Join NAM to Campaign for Funding for Their Booklets
NAM is campaigning for continued funding for their HIV patient information resources, which many of you will have used. They are asking people to show their support by signing up at: www.aidsmap.com/support-nam NAM told BASELINE; “Until very recently the production and dissemination of NAM’s materials were funded by the Pan-London HIV Prevention Programme. At the end of March, when responsibility for HIV prevention moved from the NHS to local authorities, London Councils took the decision not to continue to fund treatment information publications. Their reasoning for this was that the materials were not concerned with primary prevention. However, the London Councils recognised the quality and need for our service and recommended that it should continue, but funded by the NHS. They therefore referred the matter back to NHS commissioners. Unfortunately no one within the new NHS presently has a remit to commission patient information resources. It has ‘fallen between stools’ in the new NHS commissioning structures. There is no single body presently that has responsibility for ensuring that there are materials to support patients within clinics. We are urging the NHS to commission HIV treatment information resources, delivered by community providers (i.e. not the pharmaceutical companies), on a national basis. That way anyone who needs it, whether in Lambeth or Liverpool, can have access to the highestquality patient information material to support them on their journey with HIV. HIV service delivery in the UK is, in numerous ways, a model of excellence. The HIV patient cohort is one of the best informed and most treatment-fluent of any disease area. The doctor-patient dialogue in HIV is second to none. Let’s keep it that way!” 42
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Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk Waverley Care launches ‘Always Hear’ Campaign in Schools Across Scotland With almost 6,000 people living with HIV in Scotland, Waverley Care - Scotland’s leading charity providing care and support to people with HIV has launched a new awareness and anti-stigma campaign ‘Always Hear’ to give people who live with HIV a voice. Short films have been created, capturing the experiences of four people who are HIV positive. They are true stories, told by the people themselves about what it’s really like living with HIV in Scotland, and can be watched at www.hivalwayshear.org/our-stories A survey by National AIDS Trust revealed that 85 per cent of respondents believed that all young people should be taught about HIV in secondary schools. In response, as part of the campaign, a resource pack has been specially developed by Waverley Care to help young people understand HIV. The resources are linked to Curriculum of Excellence and produced in association with Education Scotland. The pack will be distributed to every secondary school across the country this week via local authorities. Michael Paley, Pupil Support Leader at Drummond Community High School, said: “There is a real necessity for schools to have access to a clear and concise HIV educational resource and Waverley Care has delivered just that with ‘Always Hear’.”
NAT Report on Housing and HIV
Do you live in Rochdale? GHT offers a monthly Advice Surgery on the last Friday of the month! Book your appointment by ringing Ben on 0161 274 4499. www.baseline-hiv.co.uk
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NAT recently conducted a short survey into housing and HIV. It was designed to capture how organisations which provide support and advice to people living with HIV view the impact that welfare reform and the Localism Act 2011 is having on their service users. The report is available at www.nat.org.uk ++
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The race is on between a number of pharmaceutical companies to launch the first interferon free-all oral combination to treat hepatitis C. One hundred per cent clearance rates are the new goal for all (years back interferon alone would cure 5-6% of people). At the International Liver Conference in Amsterdam recently the talk was of ‘global eradication’ of hepatitis C within the next 15 years. To achieve that, testing programmes everywhere will need to be ramped up and conversations between doctor and patient about treatment need to begin. Right now, many people are being ‘warehoused,’ that is, being put on hold for treatment until simpler and more effective treatments are available. There will likely be a period where hepatitis C treatment remains based around ribavirin (which has its own signature toxicities). Anaemia, some would say, its Achilles’ heel, appears less of a problem than in the past. If you are taking triple therapy including one of the two currently available HCV protease inhibitors, you can afford to drop your ribavirin dose (something that doctors were often reluctant to do when using pegylated interferon and ribavirin). Lowering the ribavirin dose lifts your haemoglobin and you are likely to feel a whole lot better in the process. So we are not only getting better response rates from the protease inhibitors but we are better able to manage their side effects. At EASL some docs were saying that ‘interferon is not dead yet,’ but in two or three years time hepatitis C treatment will doubtless look a whole lot different. Eradication in our lifetime now seems completely possible and there’s an avalanche of new potent medicines on the horizon. We’d like to thank Abbvie Ltd for support with our conference attendance. Contact the team: Editor: Robert Fieldhouse robert@baseline-hiv.co.uk Associate Editor: Jane Phillips editor@baseline-hiv.co.uk News Editor: Chris O’Connor chris@baseline-hiv.co.uk
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Editorial Administrator: Tom Matthews Development Manager & Photographer: David Rowlands david@baseline-hiv.co.uk Proof reader / Social Networking Michael Duggan / Rebecca Gibson Designer: Gareth Williams Intern: Daniel Jon
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Contents 46 headline: UK news 47 headline: treatment news 52 treatment: perspectives 54 ELPA news 56 get tested fundraiser 57 join world hepatitis day 58 life with hepatitis C and HIV
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 or hepatitis status or lifestyle.
Summer 2013
Steve Akehurst
Download www.baseline-hep.co.uk
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UK: hepatitis news Treat Active Drug Users for HCV And Reduce Prevalence
Active Injection Drug Use Not A Barrier to Cure with HCV Treatment
Researchers from the University of Dundee have analyzed treatment results for 291 people with hepatitis C, comparing outcomes for people who had never injected drugs to those of active and former users. 61% of people who had never injected drugs achieved a sustained virological response, (SVR), which is usually regarded as a cure. About 55% of former users and 47% of active users obtained an SVR. The authors concluded that active injection drug use “is not a barrier to treatment or a successful achievement of SVR.”
EU Approval for Twice Daily Telaprevir
The European Commission (EC) has approved a new twice daily dosing of telaprevir, a direct acting antiviral (DAA) protease inhibitor, in combination with pegylated-interferon and ribavirin (PR) for people with hepatitis C beginning treatment for the first time and people who have previously taken hepatitis C treatment before. The newly approved dose is now 1,125 mg twice daily in combination with PR. The EC approval is based on results from OPTIMIZE, a randomized, open-label, multicentre Phase III study in people with genotype 1 chronic hepatitis C infection taking hepatitis C treatment for the first time which demonstrated that twice daily dosing of telaprevir 1,125mg in combination with PR was non-inferior to the previously approved dosing every 8 hours. Twice daily dosing also showed similar cure rates with twice daily or every 8 hours telaprevir dosing in patients with cirrhosis. 46
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Research from University of Bristol, London School of Hygiene and Tropical Medicine and other institutions project that if just 20 out of 1,000 active injection drug users are treated for hepatitis C each year, it could stop them transmitting hepatitis C to others and reduce hepatitis C prevalence by nearly 30% in 10 years.
Scotland Leads The Way in Diagnosis and Treatment of HCV
Because Scotland was badly affected by a wave of hepatitis C in the 1980s the country is beginning to witness the damage untreated liver disease can cause in terms of increasing end-stage liver disease. The country is expecting a rise in demand for liver transplants over the next 10 years. Scotland, with a population of only five million, launched a £100 million (about $150 million) programme, running from 2008 to 2015, to diagnose and treat hepatitis C, regardless of the patient’s history including injection drug use. To put the investment in context the U.S spends about $30 million each year on hepatitis C prevention, compared with $800 million on HIV prevention, yet more people die there due to hepatitis C compared with HIV. About half of the 38,000 people thought to have been chronically infected with hepatitis C have now been diagnosed, up from 39% in 2007. Right now around 1,100 new patients are receiving hepatitis C treatment annually, almost three times the amount compared with 2007. The aim is to treat around 2,000 people each year and in doing so, avoid around 5,200 cases of cirrhosis by 2030. To improve diagnosis rates further, Scotland is providing rapid hepatitis C screening at all needle exchanges- as data suggest 90% of those affected are active or former injection drug users. +
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Robert Fieldhouse
treatment: hepatitis news ABT-450/Ritonavir + ABT-267 +/- ABT333 + Ribavirin
Treatment with a 4-drug regimen of ABT-450/ritonavir, ABT-267, ABT-333, and ribavirin (RBV) for 12 or 24 weeks achieved very high sustained virological response rates at 24 weeks post treatment (SVR24) in people without cirrhosis with genotype 1 HCV. The treatment was generally relatively well-tolerated and worked extremely well in people who had previously not responded to pegylated interferon/ribavirin therapy. ABT-450 is a HCV NS3/4A protease inhibitor taken once daily with low-dose ritonavir. ABT-267 is a NS5A inhibitor taken once daily. ABT-333 is a non-nucleoside NS5B polymerase inhibitor which is taken twice daily. SVR24 rates 90% to 96% in treatment-naive patients, 93% to 95% in previous null responders. SVR24 rates ≥ 89% in several difficult-to-treat populations, including those with HCV genotype 1a infection and harder to treat non-CC IL28B genotype. Treatment-related side effects were typically mild in severity. People with genotype 1 HCV received a combination of ABT-450/ritonavir with ABT-267 and/or ABT-333, with or without ribavirin, for 8, 12, or 24 weeks. The highest SVR24 rate was among people who had never taken hepatitis treatment before (96%) who took the 4-drug regimen for 12 weeks. The highest SVR24 rate among people who had previously not responded to hepatitis treatment was 95% among people who took the 4-drug regimen for 24 weeks. These drugs were recently granted ‘breakthrough drug’ status by the US Food and Drug Administration. This status is intended to expedite the development and review of drugs for serious or life-threatening conditions. No people living also with HIV were included in this study. www.baseline-hep.co.uk
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Daclatasvir + Asunaprevir + BMS-791325
Dactlatasvir is a NS5A replication complex inhibitor. Asunaprevir is a NS3 protease inhibitor. BMS-791325 is a non-nucleoside NS5B polymerase inhibitor. Researchers at EASL presented data from an all-oral combination of daclatasvir, asunaprevir, and BMS-791325 which achieved high sustained virological response (SVR) rates in people with genotype 1 HCV without cirrhosis, who had never taken treatment before. Two doses of BMS791325 were studied (75 mg and 150 mg). 66 people were given treatment with these three investigational drugs for 12 or 24 weeks. Sustained virological response rates of ≥ 90% were seen with both 12-week and 24-week therapy. 94% of patients receiving daclatasvir, asunaprevir and BMS-791325 achieved an SVR12. SVR rates similar with 75 mg and 150 mg doses of BMS-791325. The combination was well tolerated at both doses of BMS-791325. The regimen was generally safe and well tolerated. There were no discontinuations due to intolerance or side effects. No people living with HIV were included in the study. 47
treatment: hepatitis news Anaemia During Triple Therapy Can be Improved with Ribavirin Dose Reduction
Anaemia is one of the most reported side effects among people taking triple therapy with the HCV protease inhibitors boceprevir or telaprevir; with half of people developing it in a population of people with chronic hepatitis C in North America. Researchers looked at the medical notes of more than 1400 people treated with triple therapy at one of 44 academic centres or 59 community medical centres in the USA or Canada. Nearly 40% of the patient population had cirrhosis- much higher than in Phase 3 clinical trials. Of the 1,082 patients in the study taking telaprevir, 27 (2.5%) developed severe anaemia and five patients developing severe rash, researchers found. Among 344 patients on boceprevir, six (1.7%) developed severe anaemia. Anaemia was typically managed with ribavirin dose reduction for those with cirrhosis and without (65% and 54% respectively, rather than using erythropoietin (EPO) (used in 13% of cirrhotic patients and 19% without) or blood transfusion (used in 17% and 8% of cirrhotic and non-cirrhotic patients, respectively). People with cirrhosis were more likely to develop anaemia (22%) compared with 14% of people without cirrhosis. They were also more likely to stop treatment due to side effects (12% vs 7% among people without cirrhosis). The researchers found virological response rates in this real world patient population to be similar to, if not better than, those documented in clinical trials, meaning that reducing ribavirin dose to improve anaemia did not prompt any reduction in the likelihood of achieving a cure. 48
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MK-5172 â&#x20AC;&#x201C; Second Generation PI Looking Good
MK-5172 is a second-generation hepatitis C protease inhibitor. At the EASL meeting in Amsterdam researchers presented data showing it achieve a higher response rate in people who had never taken treatment before when given with pegylated interferon and ribavirin compared with the currently licensed protease inhibitor boceprevir and PegINF/RBV. Participants took 12 weeks of triple therapy. If they were undetectable at week four they continued for an additional 12 weeks, if not, they continued for an additional 36 weeks. In total 90% of people with the harder to treat HCV genotype 1 receiving MK-5172 had a sustained virological response 24 weeks after completing treatment (SVR24). In comparison triple therapy including boceprevir led to a SVR24 in 54% of trial participants. Overall, 14% of people taking boceprevir stopped treatment due to side effects, compared with 7% taking MK-5172. No study participants died during the trial. There were similar rates of serious side effectsâ&#x20AC;&#x201C; 9% in the combined MK-5172 arms and 8% in the boceprevir arm, these included gastrointestinal problems, rash, and anaemia. There was only a marginal difference in SVR24 rate when researchers broke the response down by IL28B gene subtype, which predicts response to interferon. During the study some participants had their dose of MK-5172 reduced from 800mg or 400mg once daily to 100mg once daily. This will be the dose that moves forwards in clinical trials. No people also living with HIV were included in the study. +
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treatment: hepatitis news Daclatasvir + Sofosbuvir +/- Ribavirin
Faldaprevir + PegIFN + Ribavirin Faldaprevir is an investigational second-generation protease inhibitor. In clinical trials with pegylated interferon and ribavirin it cures up to 80% of previously untreated people with genotype 1 HCV. 656 people with chronic HCV were randomised to receive at least 12 weeks of faldaprevir or placebo, in combination with pegylated interferon and ribavirin. Two doses of faldaprevir (120mg once daily or 240mg once daily) or placebo were studied for at least 12 weeks, in combination with pegylated interferon and ribavirin. 80% of patients taking faldaprevir 240mg and 79% taking the 120mg dose achieved SVR12, compared with 52% in the pegylated interferon/ribavirin arm. The 120mg dose was more tolerable. 12% people taking the 240mg dose developed gastrointestinal symptoms compared with 7% in the faldaprevir 120mg arm and 3% in the control arm who were taking pegylated interferon and ribavirin with a placebo. Response to faldaprevir was lower among people with HCV genotype 1a compared with genotype 1b (69% vs 84% achieving SVR12). This was driven by higher rates of viral breakthrough during treatment and higher rates of viral relapse following the completion of treatment. 50
Thereâ&#x20AC;&#x2122;s hope for people who have previously not responded to triple hepatitis C therapy with pegylated interferon and ribavirin and one of the licensed HCV NS3 protease inhibitors telaprevir or boceprevir following the release of research including an interferon-free combination of the NS5A replication complex inhibitor daclatasvir and the polymerase inhibitor sofosbuvir, with or without ribavirin which cured 100% of trial participants. 41 people with genotype 1 HCV, more than 80% of whom had harder-to-treat subtype 1a were enrolled in the trial. Almost all the participants had the unfavourable IL28B genes â&#x20AC;&#x201C; CT or TT (CC being the favourable genotype). Only 20% of study participants had been treated with boceprevir. Almost half of the participants harboured resistance to boceprevir or telaprevir (the average time of previous treatment was 2.4 years ago (with some patients being treated 5 years ago and some being treated as close as one month before enrollment in this trial). People were randomised to receive 60mg oncedaily daclatasvir plus 400mg once-daily sofosbuvir, a proportion of people added 1000-1200mg per day of ribavirin for 24 weeks. 12 weeks following the completion of treatment, SVR12 rates were 100% among people treated with sofosbuvir/daclatasvir. Unfortunately the pharmaceutical companies who are developing these medicines (Gilead and BMS) are not pursuing further clinical trials of these drugs together as they are instead pursuing trials using their own medicines. An internet campaign to lobby the companies to work together can be found at www.change.org/petitions There were no people also living with HIV included in this study.
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Robert Fieldhouse
Simeprevir + PegIFN + Ribavirin Simeprevir is an investigational HCV NS3/4A protease inhibitor. It is taken a single tablet once daily. 264 people with genotype 1 hepatitis C who had never taken hepatitis treatment before were randomised to receive simeprevir plus pegylated interferon and ribavirin for 12 weeks. If participants achieved an extended rapid virological response (RVR) (meaning their HCV viral load was <25 IU/ml (undetectable) at week 4 and also at week 12) they could carry on with PegIFN/RBV alone for 12 weeks. If they did not achieve a RVR treatment was continued for an additional 36 weeks. A comparator group of 130 people took pegylated interferon and ribavirin (pegIFN/ RBV) plus a simeprevir placebo for 12 weeks followed by 36 weeks of pegIFN/RBV. 85% of patients receiving simeprevir achieved a rapid extended virological response, which meant they were eligible for 24 weeks treatment. Simeprevir plus pegIFN/RBV was found to be superior to pegIFN/RBV alone for sustained virologic response rate at 12 weeks posttreatment (SVR12); 80% receiving simeprevir plus pegIFN/RBV achieved SVR12 compared with 50% taking pegIFN/RBV. The most frequently reported side effects were headache, pruritis and fatigue. There were no additional toxicities experienced by people taking simeprevir. Patient’s reported productivity impairment, activity impairment, and increased absenteeism from work. The study did not include people living with HIV. Simeprevir recently received priority review status from the U.S. Food and Drug Administration (FDA), giving it an estimated timeline of 6 months in the USA. An application for approval has also been lodged with the European Medicines Agency. www.baseline-hep.co.uk
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Ledipasvir + GS-9451 + PegIFN + Ribavirin
Ledipasvir is a NS5A inhibitor taken at 90mg once daily. Phase 2 It’s taken as a once daily pill G-9451 is a second-generation protease inhibitor, taken as a 200mg tablet. 123 people received these two investigational drugs along with pegIFN/RBV for 6 or 12 weeks. Trial participants had never taken hepatitis C treatment before, had chronic genotype 1 HCV infection and IL28B CC genotype. IL28B CC is a genotype strong predictor of SVR following pegIFN/RBV in patients with genotype 1 HCV. IL28B genotype appears relevant with direct-acting antivirals (DAA) regimens too. Among early responders, (people who achieved an undetectable HCV viral load at week 4) 89% (101/113) receiving quadruple therapy in combined 6-week and 12-week treatment arms compared with 73% (38/52) in pegIFN/RBV arm achieved SVR12. There were higher SVR12 rate with 12 weeks vs 6 weeks of quadruple therapy (98% vs 79%, respectively). The most frequently reported side effects were headache, nausea and fatigue. None of the patients in this study had cirrhosis, and none were HIV positive. Gilead Sciences has taken the decision to halt testing of quadruple therapies (2 direct acting drugs and interferon/ribavirin). It’s really unlikely that an intensive combination such as quadruple regimen containing pegylated interferon and ribavirin would be in demand from patients who will hopefully have many simple, shortcourse all tablet (and interferon-free) options to choose from in a few years. A separate study evaluated the co-administration of ledipasvir, GS-9451, and peginterferon/ribavirin for 24 weeks and resulted in 70% achieving a sustained virologic response in treatment-experienced patients with genotype 1 HCV infection. But 87% patients who achieved extended rapid virologic response (eRVR) and took 24 weeks of treatment achieved SVR12. +
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Hepatitis C:
A Treatment Journey
A year ago I went through six, well, seven months of Hep C treatment. It was quite an experience. The start and the finish of the infection were never really clear cut – first of all, it appeared to be an acute infection, which my body seemed to clear itself. But six months later it was back again, and it was uncertain whether this was a new infection, or that the old one never went away properly. Next, the question of if and when to start treatment seemed to take ages, with one blood test after another and trips back and forth to the clinic. Similarly, the end was a question of waiting. After the end of treatment, my viral load was undetectable, as it was 3 months later, and 6 months, and 9 months later. Waiting, waiting and wondering.
I was constantly feeling a bit ‘under par’ and my head felt like I was trying to think and focus through a cloud of cotton wool. The interferon made me feel like I was on the verge of going down with something, with all the classic flu-like symptoms. I was impatient, and had a short fuse. I felt the urge to murder the old ladies with their trolleys in the supermarket who seemed to me to be moving in slow motion. Later I noticed I could be unfocused and had some memory loss. Not good combined with impatience. One time I put my card in the cash dispenser, typed in my PIN, took my card and then forgot to take the £30, which of course I never managed to find when I went back for it! It seemed like an odd combination – being physically tired, yet my mind was hyperactive, and this drove me on and on, like a wound up spring. After a few months my libido dropped. Considering sex is an important part of my life, I was surprised not to miss the urge. At a certain
‘Although the side effects were heavy, they were not so bad that I couldn’t fight my way through them.’ Funny really in a condition and a treatment where one of the side effects is lack of patience. Adding another few tablets to my dosette box was no problem. The idea of a weekly interferon injection had me more worried. I’m on the verge of being needle phobic, never wanting to watch my bloods being taken. I can give someone else an injection, but doing that to myself was a challenge. A couple of counselling sessions, aimed at desensitising me to the idea of injecting myself, did help. When it came to it, it wasn’t such a big deal. Still, I think I would make the world’s worst injecting drug user! 52
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point, I was just focusing on the basic aspects of my life – my part-time work and my sport.
‘I felt the urge to murder the old ladies with their trolleys in the supermarket who seemed to me to be moving in slow motion.’ Somehow I managed to keep both going throughout the treatment. I’d heard I might need to put my life on hold during treatment, but I’d be buggered if I’d do that. I love life too much to want to slow down or creep under the duvet for half a year. Four months into treatment I even went skiing for the first time in my life. I think I was fortunate that although the side effects were heavy, they were not so bad that I couldn’t fight my way through them. The side effects crept up on me, and just like other aspects of hep C, they didn’t have a clear start or finish – over half a year later, I still notice some subtle changes in focus, or in temper. www.baseline-hep.co.uk
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Treatment put a definite strain on my relationship with my husband. He found living with me hard going, despite my boyfriend calming him down and de-briefing him when the pressure cooker got too heated. My boyfriend coped far better, but then he only spends one week in six with me, and he’s had a previous partner who went through the same treatment, so knew exactly what to expect. It seems that for people who knew me well, my character changed. From my perspective, I was aware of changes in my mood and in my temper. Keeping active helped keep my mood up. I had a strong feeling that if I stayed at home, stayed in bed and became poorly, then I’d start looking inward and go into an ever-decreasing spiral. I’m certain that hyper-activity staved off depression. If ever I stopped, or slowed down too much, I’d immediately experience a mood drop. Interesting as it was, it’s not an experience I’d want to repeat in a hurry. +
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Martin Georgiev
ELPA Calls for Compassionate Access to Hepatitis C Drugs During the International Liver Congress in Amsterdam, the European Liver Patients Association (ELPA) held a symposium entitled ‘Compassionate Use in hepatitis C: Saving lives of those who cannot wait.’ Many people living with hepatitis C cannot benefit from currently approved therapies. Some of them are already very ill and may die if their hepatitis C infection is not cleared very soon. Compassionate use programmes can make promising new medicines available to patients with life-threatening, long-lasting or seriously disabling illnesses. This is possible even when a medicine has not yet been authorised for their condition, and when entering a trial is not an option. At the symposium, speakers from the European Association for the Study of the Liver (EASL), the European Medicines Agency (EMA), a representative for the Bulgarian Health Ministry as well as patients from ELPA and the European Aids Treatment Group (EATG) presented their views. All participants agreed that compassionate use programmes for hepatitis C patients were urgently needed. Safety aspects need to be observed and novel drugs should only be prescribed by medical experts. The EMA was requested to issue a positive opinion on compassionate use in hepatitis C. However, doctors and patients also have to comply with country specific legal rules as national regulations may differ. A detailed report of the symposium will be published on www.elpa-info.org ELPA and EATG are jointly working with experts to offer guidance on compassionate use in hepatitis C. 54
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New EU Alcohol Strategy Needed
The first Awareness Week on Alcohol Related Harm (AWARH), held in Brussels on 13 to 17 May, was jointly organised by the European Association for the Study of the Liver (EASL), the European Liver Patients Association (ELPA), the European MutualHelp Network for Alcohol-related Problems (EMNA), the European Federation of Associations of Families of People with Mental Illness (EUFAMI), EUROCARE, Alcohol Concern and Lundbeck. Two distribution sessions were held every day to inform the general public about the cost of alcohol-related harm in Europe, and the necessity to adopt appropriate measures at EU and national level to address this issue, including the renewal of the EU alcohol strategy. The event sought to highlight the overwhelming burden of alcoholrelated harm and alcohol dependence in Europe amongst decision makers and politicians, and call for targeted policies at EU and national level based on an integrated, holistic approach. This policy call, outlined in the joint paper ‘Conclusions of the EU Roundtable on an Integrated Approach to AlcoholRelated Harm’ was launched during the Week at dedicated meetings with national and EU decision makers, experts and relevant NGOs, healthcare professionals and patient organisations. +
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HIV/HepC Co-infection Held over three consecutive Saturdays or six evenings, this group offers support for HIV positive gay and bisexual men who also have hepatitis C. Topics include disclosure, transmission, treatments, re-infection and emotional wellbeing. The course aims to increase knowledge and confidence in discussing their condition and coping with issues specific to co-infection.
All groups are led by qualified facilitators and aim to provide a safe, friendly environment and the opportunity to meet others. Sessions are held in central London locations including Soho and Kingâ&#x20AC;&#x2122;s Cross. To book a place, contact Groupwork London on 0207 812 1773 or email groupworklondon@tht.org.uk For information or support contact: THT Direct 0808 802 1221 The Hepatitis C Trust 0845 223 4424 Terrence Higgins Trust is a registered charity in England and Wales (reg no. 288527) and in Scotland (SC039986). The Hepatitis C Trust is a registered charity in England and Wales (reg no 1104279) and in Scotland (SC039914).
Gemma Peppé
Hepatitis C Trust Say Get Tested! The Hepatitis C Trust was IMS’s chosen charity. Most of the art was supplied by West Bank Art Gallery and the street art specialists, Urban in Ibiza. Gemma Peppé, campaign manager for Get Tested! said, “The landscape of hepatitis C has changed in the five years we’ve been coming to the IMS. The drug treatments are much more efficient. There are still 200,000 people who are undiagnosed who we will only find through raising awareness at events such as this. It’s important for us to have a presence at IMS given that so many key influencers attend.” “IMS is very happy with its long running collaboration with The Hepatitis C Trust. Hepatitis C is a very serious issue that doesn’t get the attention it deserves. The music industry should do all they can to educate industry members and the wider public,” said Pete Tong, Radio 1 DJ and IMS founder.
Actor Idris Elba, Dance Music Legend Luciano and Urban Artists Fin DAC and Inkie Support The Hepatitis C Trust’s Auction in Ibiza The Hepatitis C Trust’s flagship awareness campaign Get Tested! organised an art auction at Pete Tong’s International Music Summit (IMS) in Ibiza in May. The auction was held at the Legends Dinner to celebrate the career of Fat Boy Slim. All money raised at the event will go towards the charity’s vital work in increasing prevention, diagnosis and treatment of hepatitis C in the UK. Renowned urban artists, Bristol born Inkie and London based Fin DAC, travelled to Ibiza with Get Tested! Dance music legend Luciano and The Wire actor Idris Elba, gave their best images to Inkie and Fin DAC to create special portraits which were auctioned at the Legends Dinner. The auction has become a showcase for new and emerging talent. For the fifth year running, 56
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Join The Hepatitis C Trust’s Record Breaker This World Hepatitis Day Now in its 6th year, The Hepatitis C Trust is gearing up for World Hepatitis Day on 28th July 2013. All over the world, hepatitis organisations and patient groups will mark the day with celebratory events. Officially endorsed by the World Health Organisation (WHO), World Hepatitis Day is a worldwide health day that aims to generate understanding and awareness for the estimated 150 million people living with hepatitis around the globe. The Hepatitis C Trust will be supporting a global effort to break a Guinness World Record which was set by an alliance of global hepatitis organisations in 2012. This year we are reaching out internationally with the theme that hepatitis is being ignored as represented by the 3 Wise Monkeys in the proverb ‘see no evil, speak no evil, hear no evil’. Last year 12,588 people performed the 3 Wise Monkeys routine around the world. This year we hope to break our record with even more countries taking part. A number of Guinness World Record events will take place in the UK on 28th July. In the two weeks leading up to World Hepatitis Day, the Trust will be touring the UK with their outreach and testing van. The road show will visit locations across England and Wales, providing free, on the spot antibody testing as well as information and support about the virus. In Scotland, activities will include awareness events in prisons, a sports day ‘heptathlon’ for families, and a wide variety of other awareness and fundraising events. Hepatitis C is a condition that disproportionately affects prisoners; around 1 in 10 have the virus. As a population group, prisoners can be difficult to reach out to with awareness campaigns. To mark World Hepatitis Day, the Trust and National Prison Radio are teaming up to deliver a bespoke on-air campaign for prisoners where they will receive clear, accessible information about the condition. To organise, attend or find out more about these events, including the Guinness World Record events, visit www.hepctrust.org.uk or call 020 7089 6220. www.baseline-hep.co.uk
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Martin
Adapting to Life with HIV, Hepatitis C and Pegylated Interferon/Ribavirin Treatment Failure During June and July 2012 my life changed forever. I was a very fit marathon runner, clocking up 50 plus running miles a week and quite happily running a sub 3 hour 30 minute marathon. I enjoyed a drink and a successful career as a nurse working with infectious diseases and infection prevention – oh the irony!
‘I am hopeful that a cure is on the horizon for my HCV; genotype 4d, especially with the advent of the new protease inhibitors.’ During June 2012 I noticed difficulty running and a complete lack of energy. A blood test revealed abnormal liver function tests and that I had acute hepatitis C (HCV) infection – genotype 4d. Concerned as to how I contracted the virus, I went to the local sexual health clinic to discover I had also contracted syphilis and was experiencing an acute HIV sero-conversion illness. I was a little bit shocked to say the least! So what did I do? Well syphilis is curable, albeit with 17 consecutive days of deep intramuscular buttock injections – ouch! I’m fortunate living in a city as I was able to access support services through the Terrence Higgins Trust (THT) and attended a newly diagnosed HIV support group that I found really beneficial, if nothing else to meet other people diagnosed with HIV. I was also able to access a HCV/HIV support group run by THT in London and again this was a great learning forum and a place to meet other people affected by HCV/ HIV. This is now run jointly by THT and The Hepatitis C Trust – I would certainly recommend it as an opportunity to increase knowledge and share support. It was then recommended last August 2012 that I start treatment for HCV as soon as possible 58
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as I had the best chance of clearing it while in the acute phase. Sure, no problem I thought, I’ve got rid of syphilis, let’s get rid of HCV. I began treatment with weekly pegylated interferon injections and twice daily ribavirin tablets. I can only describe it as my world shrinking around me. I could not run because I was tired, I was anaemic, I suffered with depression, I took antidepressants and I persevered. Unfortunately, by week 12 my viral load had not dropped enough and I was termed a null responder to treatment. Strangely, I was actually quite pleased to stop treatment and not have to continue for 48 weeks and then wait another six months to see if it had worked. So now I have chronic HCV and HIV. I decided that I needed more support with HCV and attended a very informative and supported health weekend with The Hepatitis C Trust in February 2013. I would really recommend this as I gained tips on healthy living and diet and a support network of people to connect with. To keep myself up to date I receive email updates from a variety of sources such as The Hepatitis C Trust, HCV New Drugs & Liver Health, HIV weekly and infohep.org to name a few. I still practice as a nurse working with infectious diseases and my experience has given me unique insight to offer support. I also offer to buddy people thinking about HCV treatment. And so to the present, I think I’m OK, I have great supportive friends and am part of a HIV community support group called Peer Action. I chose to start antiretrovirals for HIV as it can slow the disease progression of HCV. I manage a bit of running when I can and I’m doing my best to enjoy life. I am also hopeful that a cure is on the horizon for my HCV; genotype 4d, especially with the advent of the new protease inhibitors. +
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Finding Your Way With An Integrated Care Pathway From the moment someone sits down to be told that their HIV test result has come back positive, they set off on a journey. Because there is currently no scalable cure for HIV, that journey is for life. At that first point of diagnosis, trying to see the road ahead can be like plotting a way through a bowl of spaghetti. At this stage and later, a map or pathway of the journey is helpful. For both patient and healthcare staff the first three months can be complex. At this point, it’s important that patients and healthcare staff begin to share information and know what to expect. This is not left to chance as each part of HIV care and treatment services must meet standards and guidelines set out by the NHS and by bodies like the British HIV Association. In Scotland, NHS Healthcare Improvement Scotland specifies in its HIV Standards that each NHS Board must have and use a document known as an Integrated Care Pathway (ICP) for people living with HIV. In other parts of the UK, clinics have developed similar pathways. We need these pathways so that we know what will happen if we need to be referred to another part of the hospital, how the HIV clinic links with our GP, to record results of blood tests like CD4 and viral load, and to make sure that nothing is missed. Care pathways are not unique to HIV, but are used in other health conditions too. To understand more of how Integrated Care Pathways work for HIV, it is helpful to outline what an Integrated Care Pathway is and how it works. First of all, an ICP serves more than simply a record of patient care. What makes it different to a set of case notes is that it sets out how healthcare is organised, co-ordinated and governed. These aspects make it clear which member of staff within 60
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a healthcare team is responsible for specific parts of the journey through the healthcare system. It also connects the care provided with the research and evidence set out in the Standards and guidelines, which help patients and doctors decide on the best way forward.
‘Use of an ICP doesn’t make the management of HIV any less complex, but it does simplify the process and ensures that each step is followed.’ Later, we will look briefly at the steps in a patient journey, but it is important to note that Standards apply wherever one lives. Local circumstances and patient preference mean that the exact means of achieving that Standards will differ, but in general they are the same based on the best evidence and experience. Because the ICP is not a single-track line, but a map that takes account of when we might divert from the usual route, it is a way of recording variances. The real-life route is all-important in this regard. It is not an excuse to deviate from the Standard, but allows a degree of flexibility. That flexibility, however, has to be to the benefit of the patient because an ICP must be patient-centred. Recording the variances in the experience of patients allows a comparison between that’s planned and what’s real. Wherever that happens, there ought to be a note to explain the variance. Once a number of these notes can be analysed, this forms a basis for the continual development and improvement of clinical practice. Use of an ICP doesn’t make the management of HIV any less complex, but it does simplify the process and ensures that each step is followed. The
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Roy Kilpatrick
fact that core information is brought together into one document reduces the potential for important information to be missed when making decisions about next steps in care and treatment. The fact that the ICP is linked to sets of standards and guidelines, allows for the document to be designed and used in such a way to audit and scrutinise clinical care, as well as to act as a tool in care and treatment management. In Scotland, where NHS Healthcare Improvement Scotland requires specific and improving standards, as well as equity of access to a set of services regardless of location, this serves as an important tool for scrutiny of NHS Board performance. In essence, the ICP document describes for both the patient and the healthcare staff what is to be done, by whom and at what stage. Once this is in place, then it will act as a kind of Sat Nav system so that the bowl of spaghetti looks more navigable, and less confusing than it did at the time of diagnosis. If one considers that in the first three months alone, there are potentially over 100 processes ranging from a confirmatory HIV test to recording a CD4 count that may be implemented, it is possible to grasp that good care needs to be well managed. With all the effort and stages, the ICP helps to prevent a patient duplicating the same tests unnecessarily, and also avoids delays. It is a way of staying on track with keeping the next appointment, understanding when and when not to go to the GP, who we might speak to if we need extra help, and to check whether or not medications are about to run out. When it is shared and explained, the ICP helps us to make better sense of the HIV journey. Definition of an Integrated Care Pathway: “An Integrated Care Pathway is a tool, which is locally agreed, multidisciplinary, based on guidelines and evidence where available, for a www.baseline-hiv.co.uk
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specific patient/client group, forming all or part of the clinical record, documenting the care given, facilitating the evaluation of outcomes for continuous quality improvement.” Sue Overill, Journal of Integrated Care (1998), 2, 93-98 Integrated Care Pathway A crucial aspect of an Integrated Care Pathway is that it reflects the patient needs and journey. It has to be ‘patient-centred,’ a term which is often bandied about to the extent of being meaningless, but in this context is vital as the ICP has to be as close to real life as possible. It is to improve patient well-being in every aspect, and not simply to fit what’s convenient for the clinic. For it to work properly, two factors follow logically and practically. First is that for the plan to work, patients need to be consulted and to participate in forming the plan. This might be by a discussion with a number of patients, or through a patient questionnaire or a combination of both. Although not every patient can take part, if there’s something about your care that you don’t understand, or something that would help you in particular, it is always helpful to discuss it with your doctor or other healthcare worker. In Scotland in the next few months when ICPs reach a next stage of development, you might find that you are asked to participate in a clinic questionnaire to help with the planning of care that meets the national Standards. Secondly, it depends also on good cooperation between patients and healthcare staff. For example, staff are expected to record CD4 and viral load results within a certain number of weeks, or have a discussion about how to look after your own health or protect your sexual partners. Keeping appointments on the patient’s part might seem too obvious, but this simple contribution is important to getting the best care based on the Standards. ++
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During the first three months, an ICP would set out a number of fundamental aspects of future care, including: History, e.g. diagnosis, sexual and drug history, psychiatric history, and history of allergies. Examination, e.g. neurology, body fat distribution, checking inside the eye. Investigations, e.g. confirmatory HIV test, resistance test, partner notification, key staff and consent to contact GP Screening, e.g. cervical screening for women, CVD risk, and cognitive screen where necessary. Ongoing care, advice on reducing sexual and drug risks, partner notification, needs of any children, psychological support and consent to contact GP. Over time, other aspects of care, including referral to other healthcare professionals form part of the ICP.
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If you want to read more detail on Integrated Care Pathways, here are some links: Integrated Care Pathways: A Guide to Good Practice - Nicola Davis:
In summary, use of ICPs improves HIV care through: Better co-ordination of your care Agencies and disciplines working well together Quality of care is the priority You are clear about each workerâ&#x20AC;&#x2122;s roles and
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responsibilities The clinical practice is audited directly Professions know who to communicate with about your care It reinforces the patient/healthcare worker partnership and participation
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http://tinyurl.com/opgnolr The Sexual Health and Blood Borne Virus Framework 2011-2015: http://tinyurl.com/prhq6sv NHS Healthcare Improvement Scotland www.healthcareimprovementscotland.org Map of Medicine: http://tinyurl.com/q7gkq9o SWAGNET www.swagnet.nhs.uk http://tinyurl.com/o58nlye Follow Royâ&#x20AC;&#x2122;s blog at http://scotfreehiv.tumblr.com +++-
Summer 2013
FANCY SOMETHING DIFFERENT? LONDON SOCIAL GROUPS Are you stuck doing the same things and bored of just going down the pub, but don’t know what else you can do? Do something interesting, engaging and at the same time meet new people. Visit www.gmfa.org.uk/socialgroups or email michael.flaherty@gmfa.org.uk for more info. HERO/GMFA - Charity No: 1076854. Unit 11, Angel Wharf, 58 Eagle Wharf Road, London N1 7ER.
KPS Trebullom is a Respite and Retreat B&B for people affected by HIV set in the Cornish countryside. Our recent award from the Big Lottery Fund enables us to offer KPS Enabling Futures Project Adult Personal Development Breaks 3 nights/4 days full board accommodation. For HIV+ clients who are thinking about returning to work, retraining or volunteering, who would like to know how the changes to the benefits system will affect them, and who would gain from attending workshops to help them move forward. Workshops on: Changes to the benefits system – what to expect Disclosing status – how best to do it The Equality Act 2010 – understand your rights Moving towards voluntary work or employment Plus a therapy, craft workshop and trip All fully funded Summer Camps For children aged 5 – 15 and one parent/ guardian. Fully funded weekend activity breaks
T: 01566 86378 E: sjarvis@kpsdirect.com www.kpsdirect.com
Between The Sheets in Liverpool 2012
As a reader of BASELINE you may well be aware of the lack of services in the area of sexuality and sexual health for women when we find ourselves “between the sheets.” Last year the” between the sheets” project was launched at a conference supported by Liverpool Community Health, local specialist HIV nursing staff and the HIV support organisation Sahir House. The conference was hosted at Blackburne House, an established centre of learning and conference venue for women. The Project title came about in response to conversations between Liverpool Community Health HIV specialist nurse, Pauline Jelliman, and women living with HIV (WLHIV) who Pauline had visited at home, or seen at her community-based clinic. Over a number of years common themes began to emerge from women (often from diverse backgrounds); they expressed feelings of isolation and frustration around what does or doesn’t happen “between the sheets” (as well as just before and shortly after). Over time these individual discussions became small group conversations (facilitated by Pauline). We came together as a group of WLHIV with the common goal of getting the issue of WLHIV and our sexual activity, sexuality and sexual health on the agenda. At times our conversations were broad, covering; Intimate partner violence, disclosure, post-exposure prophylaxis, menstruation, menopause, childbirth, sexuality and contraception amongst other topics. 64
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As the steering group formed we found we agreed that a healthy, active sexual life was one that was not informed by violence (or threat of violence), was not limited by ignorance or misinformation and one that had not become fearful due to experiences of stigma and discrimination. An underlying theme that emerged was that not having a healthy sexual life increased the likelihood of unhappiness in other parts of one’s life; emotionally, mentally and physically. Lack of selfconfidence and self-esteem in intimate settings, sexual health negligence and misinformation meant many women were not asking about their sexual wellbeing at clinic or GP appointments, and many did not actually feel they deserved a healthy sex life because they were ”tainted by HIV.” The threat of criminalisation meant that questions that might be asked for clarification (at clinic) were left unspoken and occasionally confidentiality was broken to unsuspecting partners without a risk assessment of whether this was safe to do by GUM staff. The steering group put together an idea for a conference with guest speakers on WLHIV and contraception, the “meaning to me” of the Swiss Statement, and criminalisation as front runners. Pre-event questionnaires were sent out to establish whether other WLHIV in the Liverpool PCT area had similar experiences or questions, to
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establish any gaps in service e.g. lack of information as well as assess how they felt about themselves in relation to their sexual activity. Staff at Sahir House and HIV specialist nursing staff in the community and infectious diseases department at our local hospital were on hand to help in filling out the questionnaires. When the questionnaires came back we felt we were on the right track and Pauline approached key speakers and the steering group discussed who might speak as a steering group member on their experiences to the assembled group of peers on the day.
‘The themes that came out were a sense of wonder that being on ART, undetectable, and adherent might well mean I am no longer infectious!’ We decided the day should have presentations and personal stories in the morning with facilitated workshops in the afternoon. The presentations would be informative, the personal stories engaging and the workshops light-hearted with important messages and skills to gain; confidently asking for pleasure in intimate settings, negotiating boundaries, building self confidence, etc. The presentations covered contraception and www.baseline-hiv.co.uk
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HIV: considerations and options;” unprotected sex in the antiretroviral (ART) era: protection, pleasure and procreation and criminalisation and prosecution. And the workshops were: Speak Up: How to confidently express your sexual needs, Your Personal Pleasure Map, and Big Love Creative Boudoir. Mingling around the event venue; a beautiful Georgian property, tastefully decorated and the space allocated to women health and HIV service professionals and WLHIV, I felt a sense of community. I heard snippets of conversations with commissioners about isolation, not having ever having been in a room or at an event with other positive women and how empowering this felt and how special it was in such a beautiful venue. I heard women speaking to doctors about contraception; “so refreshing”, said one woman, “the GUM staff only ever want to talk to me about disease control.” WLHIV were talking to their peers; laughing and sharing stories. The workshops were confidential and for WLHIV only. The themes that came out were a sense of wonder that being on ART, undetectable, and adherent might well mean I am no longer infectious!! No longer infectious!! No longer do I need then to be intimated or bullied for my HIV
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status and no longer does it need to be brought up in every argument. I have a right to contraception but was never told of different methods and their pros and cons. Dental dams? Female condoms? Show me how! I can say more of this and less of that! And, I like the feel of cotton, I can pour myself into a hot warm bath and feel my body as a friend not an infectious hazardous zone, I can brush my hair and make it pleasurable, with mindfulness. I can draw and paint what I fear to say...see this innocent flower? It represents me. See these hurtful words? They represent how you see me. In total 67 women attended the event; to put this in perspective there are 203 WLHIV in Liverpool. Post-conference evaluation The feedback regarding the venue, catering and organisation was all positive without exception and women valued a safe women-only space outside of HIV specific venues. Amongst the topics suggested for discussion at future events were negotiating safer sex and practical information about HIV and sex in “real life”; peer support; diverse perspectives – more African women to be empowered to speak; couple’s issues - pregnancy, discordance; funky safe things to do with partners; how to deal with stigma, violence and discrimination. Peer support groups were felt to be a way 66
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forward and more events in similar safe spaces. Buddying around sexual activity was suggested, as were referrals to counsellors or sex coaches. The development of a WLHIV group specifically to discuss sexual issues was suggested as well as the possibility of setting up a social forum, depending on confidentiality and/or creating a blog. ”More of the same” We’ve just held a post-conference forum this month where we fed back the event evaluation to WLHIV and other women health professionals involved in their care and our stakeholders. We hope to use the event to recruit more women to become steering group members. We also plan to consult women about topics for the next event which we hope to host in October. Personally, this event was the first occasion where I have spoken publicly about my status. I’m a member of Pozfem www.poz-fem-uk.org and believe it is important that WLHIV are visible and vocal to get women’s health and well-being issues on the HIV agenda. Others who are my peers build my confidence, give me support. I think ongoing peer support is crucial for disclosure, for women’s health information to be shared, for the choices I make to be informed, for stigma to be addressed and discrimination challenged. I am proud and happy to be a “between the sheets” steering group member.
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Summer 2013
Free conFidential rapid HiV test
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HIV +VE PEER SUPPORT in SOHO
HIV IS EVERYONE’S BUSINESS
www.GMG.org.uk
EARLY DIAGNOSIS = BETTER OUTCOMES
TO GET TESTED
testme@hertsaid.co.uk Call Tony: 07435 963170 / 01920 484 784
Working on behalf of Hertfordshire NHS and County Council Herts Aid is a registered charity 1130366; Company Registration Number 6910096 www.hertsaid.co.uk
Does life feel like it’s getting on top of you? Could you benefit from a space to take some time-out... to explore your thoughts and feelings? I am a qualified counsellor based in Finchley, North London. I am committed to providing counselling, group therapy and training in a safe, confidential and non-judgemental environment. For more information please contact Joel on 07787 226 376 or email kornjoel@hotmail.com
www.2-life.co.uk 2-Life is the trading name of all services offered by Joel Korn: Counselling, Group Therapy and Training.
+ve
WHAT WE DO:
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Offer diverse, non-judgmental peer advice Provide space to relax and express yourself with other HIV +ve gay men Check-in, followed by discussion on common themes or urgent topics Discuss living with the virus and living as +ve gay men Non-funded, independently run and facilitated by established members
WHY DO WE MEET?
. . . ..
Let off steam about, and help find selfacceptance for being +ve Combat isolation of dealing with HIV by ourselves Talk about medications (starting/taking) and coping with side effects Discuss stigma or experiences of disclosure For friendship and fun, and socialise/network with other HIV +ve gay men
WHERE & WHEN?
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Every Monday 5.30-8pm in Soho, London (apart from Public Holidays)
WANT TO ATTEND A MEETING? If you’re an HIV +ve gay man, we would be delighted to welcome you at one of our meetings. Use the contact form for meeting details at our website: www.gmg.org.uk/contact.php
Tom UKPositiveLad
A little bird told us about UKPositiveLad
Hi, my name’s Tom - and I, like many of you reading this magazine, am HIV positive. When BASELINE contacted me asking if I’d write about my journey as a HIV activist I initially thought, “What can I write that hasn’t been said a thousand times before?” But then I stopped and thought, I may have grown used to my own back story - but that doesn’t stop it being interesting or of use to other people. So let me start at the beginning (you may want popcorn).
‘I may only be one person, but I’m going to make as much noise as I can.’ When I left school at 16 I’d started a stable monogamous relationship - I even ended up entering a civil partnership with the guy. Sadly a number of years later, when I was 23; that all fell apart and I found myself single and living alone in London. Fairly quickly after that I got with another lad, it wasn’t what I needed but I didn’t want to be alone - the long and short of it is he was unfaithful to me and I ended up HIV positive. I was diagnosed on 4th August 2011, that’s a date I won’t forget. Having attended Church of England schools all my life all I’d been taught was that sex was for the purpose of procreation between a man and a woman, and that birth was a noisy messy affair. I hadn’t been taught anything about STIs, let alone HIV. So to receive my HIV diagnosis in a busy Birmingham GUM clinic on a Monday morning was somewhat of a rude awakening to the world of sexual health. Initially I took the news fairly well. I thanked 68
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the nurses for their time and started to make my way home, it wasn’t until I was at the train station that I broke down. I ended up calling one of my close friends, Paul, who came and took me home. Paul talked me through the plethora of leaflets I’d been handed by the nurses at the GUM clinic. Some of them were incredibly technical and went over both of our heads, some were so dumbed down they were almost insulting - but I found it almost impossible to relate to any of them. They seemed to go out of their way to avoid discussing the stereotype of a single young gay man with HIV, and as we all know stereotypes are usually based to some degree in fact. It was then I decided to take to Twitter. I joined under the pseudonym ‘Sam UKPositiveLad’ determined to put a realistic portrayal of a young gay man living with HIV out there, for all to see. I started anonymously, tweeting and blogging at UKPositiveLad.com about my experiences with HIV - the clinic, the health issues, my medication, the stigma, the ups and the down - it was slow at first, a few followers here and there, then things really took off. I gained a few celebrity followers who were interested in my story, they shared my blog posts with their followers and there was no going back. In 18 months I’ve amassed over 4,000 followers and a daily hit count of 10,000 to UKPositiveLad.com with over a million visitors since I first started it. In February this year I decided it was time to drop the pseudonym and be myself; that was a stressful night. I revealed my identity on Twitter and my blog, turned off my phone and went out. I returned the next morning
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Summer 2013
In 2013 Tom decided to reveal his true identity
to 53 messages and 503 tweets - all of which were supportive, it was one of the most empowering moments of my life so far. Over the last 18 months what has quickly became apparent to me is that sex education in schools has barely improved since I finished. Kids are still coming out of the school system with next to no sexual health awareness. I receive 40 to 50 emails a day via my website and the vast majority are from under-21s asking very basic questions about safer sex and HIV, this should be common knowledge for everyone finishing school today. So I’ve made it my mission, to talk to anyone who’ll listen about sexual health - and especially HIV. I’ve written for Attitude Magazine, FS Magazine, The Times and now this fine publication www.baseline-hiv.co.uk
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I have also made guest appearances on BBC World News, BBC Radio 4 & 5 Live, Gaydio, and (the late) GaydarRadio. I’m making sure to take time to visit as many gay pride events as I can, team up with the local sexual health charities and talk to the people on the streets. I may only be one person, but I’m going to make as much noise as I can. If you have an event you’d like me to come to talk at please feel free to get in touch via my website UKPositiveLad.com or on Twitter, I’m @UKPositiveLad on there. I hope you’ve found my journey thus far interesting. I hope that I’ll have the chance to speak to you all again in BASELINE again very soon. Take care of yourselves. ++
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Other Tweeters you may enjoy... Wim Vandevelde
@VandeveldeWim Global TB Community Advisory Board, Chair Cape Town · www.tbonline.info
Bisi Alimi
@bisialimi Likely to tweet about HIV, LGBT, Anal Sex, Religion, Politics & Labour Party. Made #90 in IoS most influential 2012 PINKLIST. Visit me at www.bisialimi.com
Silvia
@HIV_SpeakingUp A woman living with HIV and an activist. I believe stigma will end when we, who live with HIV, are visible and heard. Deputy CEO @PositivelyUK. Opinions my own: London: http://hivpolicyspeakup.wordpress.com/
HIV Blogger
@HIVBlogger Diagnosed with HIV in 2009 in Belfast, Northern Ireland, I’ve been blogging about living positively since about a week afterwards. Belfast · http://hivblogger.me.uk/
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derson on her Professor Jane An r on Sexual Health iso adv as ent tm appoin alth England. He lic Pub to and HIV
Sarah Radcliffe, NAT for the web guide My Care, My Voice available at www.lifewithHIV.org
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I was diagnosed three years ago and have been on treatment with Atripla for the past 18 months. My CD4 count is 650 and my viral load is undetectable. I read a recent article online that said the UK is changing from branded ARVs like Atripla over to generic drugs. It also suggested that generics are cheaper and less effective. Is this true? I am very worried that the NHS are cutting costs without thinking about the harm to HIV patients.
i-base response:
Thanks for your question and I’m sorry that the article has made you worried. It is true that some commonly used HIV meds are likely to change from branded to generic versions. This has the potential to save a lot of money for the NHS. However, it is not true that generic HIV drugs are less effective. When drugs are first approved, the company that developed them gets a license to be the only manufacturer. This usually provides 10-15 years to profit from the investment costs of developing the drug. After the patent expires, other companies can make the same drugs. These are called generic drugs. •In the UK, 60-85% of all NHS prescriptions are for generic medicines medicines - there is no reason why HIV should be any different. •This makes huge savings that enable the NHS to continue to provide free health care. •In 2013 and 2014 some of the HIV drugs that are still widely used will come off-patent. This includes 3TC, nevirapine and efavirenz. Just like in other health areas, the NHS is likely to move to generic HIV versions unless the original manufacturers also lower their prices. This is an 74
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important to remember. The companies would retain their market if they lowered their prices after the patent expires. This doesn’t mean that the quality of your drugs will change. Generic drugs that are used in the UK are just as carefully regulated as the originals. They are the same high production quality with the same active ingredients. Generic HIV drugs are just as effective as brand name originals. But generic drugs will be likely to look or possibly taste different from what you have become used to. Generic drugs will usually be a different shape and/or colour pill to the brand name drugs. They use different packaging and also have a different manufacturer and brand name but the active ingredients are the same. Not everybody will change treatment. Importantly, your doctor and pharmacist should always explain when you are changing to a generic drug and if you are worried you should tell them and have this discussion. One change that some people are worried about is the move from combination pills or fixed dose combinations to individual drugs. The availability of generic options may reduce use of combination pills like Atripla, Eviplera, Kivexa and Truvada.
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Rebecca McDowall
i-base 0808 600 8013
ask a question Unless the prices of the combination pills are reduced to reflect the reduced price of the components that have generic equivalents, the individual drugs are likely to be prescribed rather than the single pill combinations. This may increase the number of pills you take each day by one or two pills, depending on the combination. Sometimes articles claiming this could make treatment less effective might be less impartial, or be there to argue the drug company perspective. So long as you take your meds there little evidence to suggest HIV generics are less effective when they are in individual tablets compared to a combined pill. We have been very lucky to be able to benefit from dramatic advances in treatment. So on many levels HIV is no longer the medical emergency that demanded special treatment. We have our lives back - long-term - and if taking two rather than one pill a day keep other services running - at a time when all other areas of the NHS is having a funding crisis, this seems like a modest and reasonable contribution. If you are still worried about the impact of the changes on your HIV care, talk to your doctor and HIV support group, or call the i-Base phoneline for more information. www.baseline-hiv.co.uk
by email, online or phone
questions@ i-Base.org.uk www.i-Base.info/qa
0808 800 6013
take control of your treatment
Disclosure
Naming HIV within your family Telling your children they are living with HIV Telling your children you are living with HIV Meeting new partners and discussing HIV This meeting is open to all positive women across London
Wednesday 3rd July 6:00 - 8:00PM The MansďŹ eld Room 4th Floor (above the Kobler Clinic) St Stephens Centre 369 Fulham Road London SW10 9NH For more information contact administration@frontlinehiv.org
Forum Link
Providing a voice for HIV patient groups across the UK
Forum Link aims to strengthen the voice of HIV positive patient representation in both service delivery & development locally, regionally and nationally. We offer expert technical, advisory and development support for new HIV positive patient groups to assist in setting up of new groups. Contact: administration@forum-link.org 020 7738 0258 http://www.forum-link.org charity number: 1150522
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
Robert Fieldhouse
Getting Better Engaged: PPE Summit 2013 People living with HIV, community activists, tweeters and bloggers from across the UK came together in London at the start of June to discuss the latest opportunities for public and patient engagement in the new NHS. The training day was conceived by Gilead community who led on the planning of the event in collaboration with HIV community leads. Setting the tone for the day, Paul Clift, Patient Representative for the HIV Clinical Reference Group (CRG) told delegates: ‘Keep an eye open and where you see an opening, step in.” And there appears to be a lot to step into. The relative benefits of setting up a patient user group at clinic, joining your local Healthwatch, lobbying councilors, joining the existing activist networks at NAT or THT were all debated throughout the day. Chris Sandford, Patient Representative at the Bloomsbury Clinic, in a rousing speech, provided much needed context and motivation for the day: ‘If we don’t get our act together we won’t be around a lot longer. We will lose everything we have fought so hard for. We will lose our worldclass care. We have to make sure our voice is heard. Patient engagement has been hijacked by people who do not live with HIV. There’s too much talk and not enough action. We are survivors. We’ve done all this to engage others. We have to continue making a case for HIV. We have to learn how to collaborate more fully with our allies. Encourage more patient representatives. Now is the time when we can have the most influence.’ Some expressed concern about safeguarding and adequate training opportunities being available to ensure anyone who signs up to Healthwatch is supported through the process. Others questioned the impact a single individual can have in a body such as Healthwatch when as positive people we are likely to need to compete for air time with others living with other chronic conditions. Peter Keogh from Sigma Research www.baseline-hiv.co.uk
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suggested making alliances with others to have a stronger voice. Chris Sandford, told assembled delegates: ‘Have you been to a Healthwatch Meeting? Mention Sexual Health and you’re met with silence. Mention HIV and the silence is deadly.’ Professor Jane Anderson reminded us that; ‘Many people living with HIV have a voice that is never heard and reminded us; HIV Funding is no longer ringfenced and any efficiency savings made in HIV won’t necessarily remain in HIV. A strong patient voice is vital to keep it on the public agenda. Directors of Public Health are the key players. They are critical in the new health economy. You have to meet them and explain why HIV remains so important.’ She drew our attention to the Framework for Sexual Health Improvement which the government published in March, describing it as ‘an aspirational document,’ but a key lever all the same. Jeremy Taylor, Chief Executive of National Voices, the national coalition of health and social care charities for England told us: ‘There’s a huge amount of rhetoric about putting patients at the heart of the NHS. ‘Patients as Partners’ has become very fashionable. Former Health Secretary Andrew Lansley’s mantra was “no decision about me without me”. I once asked him what he meant by that and he did not give me an answer I understood and I don’t think he did either.’ ‘A lot of people say healthcare is not shopping. Let’s not dismiss the concept of the patient as a consumers; the notion of patients as leaders can only grow.’ By the end of the day, we were all more clued up about the existing local and national initiatives to help us have our voices better heard and discovered a few more. ‘Find out and take part in Health and Social Care Scrutiny Committees. Councillors often want to make a name for themselves,’ was the advice of Dr Ray Walsh from NHS Lambeth Clinical Commissioning Group. ++
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David Rowlands
6. Antidote, Turning Point 21 Wardour Street London W1D 6PN Tel: 020 7437 4669 www.antidote-lgbt.com
1. Summit House Support Martin Hill Street Dudley DY2 8RT Tel: 01384 243 220 www.summithousesupport.co.uk
7. The Hepatitis C Trust 27 Crosby Row London SE1 3YD Tel: 020 7089 6220 www.hepctrust.org.uk
2. LGBT Alcohol Support Group HGL, 146 Bromsgrove Street Birmingham B5 6RG Tel: 0121 440 6161 www.lgbtalcoholsupport.org
8. Trade Sexual Health 3rd Floor, 15 Wellington Street Leicester LE1 6HH Tel: 0116 254 1747 www.tradesexualhealth.com
3. The Brunswick Centre Marten House, Fern Street East St Andrew’s Road Huddersfield HD1 6SB Tel: 01484 46969 www.thebrunswickcentre.org.uk
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4. George House Trust 77 Ardwick Green North Manchester M12 6FX Tel: 0161 274 4499 www.ght.org.uk 04
5. Waverley Care 3 Mansfield Place Edinburgh EH3 6NB Tel: 0131 558 1425 www.waverleycare.org
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9. GenderShift Ltd The GenderShift Centre 44-46 Portland Street Hull HU2 8JX Tel: 01482 755600 www.gendernetwork.com 09 08
07 06
10. Yorkshire MESMAC PO Box 19 Wakefield WF1 2YE Tel: 01924 211116 www.mesmac.co.uk
This reflects a small number of the valuable groups providing support to people living with HIV. If you can recommend a local HIV or hepatitis support group email: david@baseline-hiv.co.uk 78
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Summer 2013
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Joel Korn
Hurts so good In this column I’m going to focus on pain – yes, that thing that many of us living with HIV face daily. My pain is not related to HIV, although I can imagine it has not helped. After years of doctors suggesting many different possible diagnoses they finally suggested I had possible dystonia.
‘It has taken me many years to form a positive relationship with using a stick; people do not understand, they judge.’ Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. For some, having a label is helpful – having lived with this condition for eight years with no ‘official’ diagnosis, I had come to label it “squishy leg syndrome”. I have decided that I’m not going to let it slow me down. However, the older I have got, the more concessions I have had to make. I’ve had to learn to give the condition the respect it deserves. I live with pain sixty per cent of the time and, as I’m sure those that can identify with this story know, it is not an easy task. Having to take quinine and amitriptyline every night, sometimes doubling the dose so I can get a comfortable night’s sleep is not something I would wish on anyone. Sometimes this is just what I have to do to get by. It can be difficult to negotiate the pain when the role I’ve chosen in life is to look after and support others. My work occasionally permits me to leave my ‘squashy leg syndrome’ at the door and focus. For many of us it can be frustrating that we cannot explain our pain. People often want to know what has triggered it, or may feel we are making it up as a cry for help. Sometimes we do not have “answers” for those around us, and in my experience this can make you feel like you are 80
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going mad. Our society’s collective experience of pain is that you take a pill and it goes away. The pain I have is different in that it is caused by “something”. But we can also feel pain when feeling stressed or depressed, which is common in everyone’s life experience, not solely when living with HIV. Depression can cause pain and pain can cause depression. Sometimes pain and depression create a vicious cycle in which pain worsens symptoms of depression, and then the resulting depression worsens the feelings of pain. Recently, I attended the COPE Pain Management Programme, through the Pain Management Department, at the National Hospital for Neurology and Neurosurgery, where I receive dystonia care. For me, it has been useful to have a programme outside of HIV where I was able to meet and gain support from others dealing with all types of pain. But some made me feel a bit of a fraud for being there. It has taken me many years to form a positive relationship with using a stick; people do not understand, they judge. Let’s face it our society is not able to cope with people less able than ourselves. People sometimes assumed that my stick is a fashion accessory, or that it is a façade; thankfully it is now my constant friend. It is there like my family, friends and work colleagues when I am having a flare up. Also, learning to communicate about my pain and ask for help has been a very useful task. I know for myself for a long time, I have struggled to tell myself to slow down, as for me slowing down meant giving up. Also, as most of my work colleagues, family and friends know I do like having a project on my hands; filling time and having a distraction is often my way of dealing with pain. The most important message I took from the COPE Pain Management Programme is that pain can be useful - it tells me when there is something going on with my body, letting me know when I need to slow down and look after myself. www.2-life.co.uk
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Summer 2013
HEPATITIS C INFECTIONS AMONGST HIV-POSITIVE GAY MEN ARE RISING
Hep C can be sexually transmitted by fisting, group fucking, sharing sex toys, sharing pots of lube or fucking without condoms. It can also be transmitted by sharing drug injecting needles or snorting straws. Hep C can cause serious liver disease and premature death. Hep C often shows no symptoms. Early diagnosis and treatment are vital.
ASK AT YOUR CLINIC ABOUT HEP C TESTING For more information visit www.gmfa.org.uk/hepc GMFA projects are developed by positive and negative volunteers. To volunteer or donate, call 020 7738 6872 or go to www.gmfa.org.uk Charity number 1076854 • Information accurate as of June 2010 • Design by craig.hewitt1@virgin.net ++++ ++ www.baseline-hiv.co.uk Photography by James Stafford • Dakota Strong supplied by www.maleorderagency.com Supported by the Derek Butler Trust
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‘The idea that everyone can provide HIV care is a misnomer.’ Dr. Mike Youle
73,659:
the number of people in the UK living with a diagnosed HIV infection and receiving care
36,355:
‘47,848 children were receiving HIV therapy in 2011 in Kwa Zulu Natal, South Africa. Back in 2005 there were just 1,274.’
the number of people in care who acquired HIV through sex between a man and a woman
31,825:
the number of people in care who acquired HIV through sex between men
Dr Karyn Moshal
‘With any qualified provider providing HIV care, we may find a jumper that’s too small and the pattern’s wrong.’ Professor Jane Anderson
1,636:
the number of people in care who acquired HIV from injecting drug use
1,488:
the number of people in care who acquired HIV at birth
533:
the number of people in care who acquired HIV from tainted blood or blood products
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Let’s talk� about me and my options “I am finding more ways to work� with my healthcare team and� live healthier with HIV”� App available at iTunes App Store
Download “My Health Matters” iPhone app to help you get the most from your healthcare team and HIV treatment Contributing to HIV care for over 25 years www.managingmyhiv.co.uk
Download code reader and scan code for further information on My Health Matters App
This app and website were developed and funded by 06-15 INFC-1086205-0000
Date of preparation: June 2013