VAGINAL RING: MICROBICIDES AT TIPPING POINT RING NOW: JOIN THE START STUDY RING A BELL? HIV STIGMA JULY 2010. ISSUE 4
Pick me up. I am free.
IS IT
TWO RED AND
ONE GREEN, OR THE OTHER
WAY ROUND?
If you don’t take it, talk about it.
Anti-HIV medication can be complicated, but that shouldn’t stop you taking it properly. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at www.yourstoryyourscript.co.uk
August 2009, HIV/0509/2906
Ringing in the changes Shortly before leaving office, the outgoing Labour administration lit the torch paper for the removal of the ring fence around the AIDS Support Grant which has funded the vital work of many HIV charities since 1989. The ring fence was to go next year, giving those charities a time to seek alternative funding. The new coalition government went a step further; on June 10 Communities Secretary Eric Pickles announced the AIDS Support Grant ring fence would go during this financial year. NAT (National AIDS Trust) has urgently sought assurances from the Government that steps will be taken to ensure local authorities continue to meet the social care needs of people living with HIV/ AIDS. But, the loss of the ring-fence means they are under no duty to do so. On June 22 the Chancellor announced that Disability Living Allowance (DLA) will be reformed from 2013/14. Making it more difficult to be awarded this support will undoubtedly make life harder for many people with HIV/AIDS. Now is the time to contact your local authority and remind them about the vital work your local HIV organisation does. Thanks to all the clinics who have agreed to distribute free copies of BASELINE; if you’d like more next time send us an email to editor@baseline-hiv.co.uk Please join our facebook group (BASELINE) and follow us on twitter (Baselinetweet).
TM
Editor:
Robert Fieldhouse
Associate Editor: Jane Phillips
News Editor: Chris O’Connor
Sub Editor: Joanne Russell
Editorial Support: Tom Matthews
Design & layout:
Meryl Media - 0161 235 7279
Publisher:
Fieldhouse Consulting Limited
Courtesy www.ipmglobal.org
Email: editor@baseline-hiv.co.uk Phone: 0121 449 4405 or 07886 159735 Copyright of all images and 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.
In this issue
04 bylines 05 drop-us-a-line 06 jabs and gels: Microbicides & vaccines 10 headline: UK 14 start study 19 headline: global 22 starting HCV treatment 26 BASELINE at BHIVA 28 myline: Julie Musonda 30 thick as thieves: HIV & stigma 34 hotline 36 headline: treatment 38 introducing AIDS orphan UK 40 romania in focus 44 Q & A i-base 46 myline: Joel Korn 48 NAT fundraiser: pics 50 positive action for children 52 myline: Tim Baros 55 myline: JD Bailey 56 lancashire in focus 58 punchline: kope 60 lifeline: HIV 62: headline: healthy living 63: volcanic ash insurance 64 headline: hepatitis 66 fineline and numbers 03
deadlines
for the next issue Copy 01/09/2010 Advertising 10/09/2010 Rob Fieldhouse is an extremely busy and Simon Collins is a leading HIV advocate. He lucky man who travels the world reporting and presenting about all things HIV.
heads up HIV i-base. Jay Obrecht lives, eats and breathes
Jane Phillips has been Rob’s software advisor, cartoons, believing they are a powerful tool manager and personal calming therapist for some time now and is really happy to be doing it. Maybe heading back to the UK from rural France...
to teach, persuade, impress and entertain. His first cartoon appeared in The Sun.
Tim Baros pays the rent by working in Chris O’Connor covers issues from the wine the City. In his spare time, he writes film trade to the trade in counterfeit medicines and has reportedly widely on HIV.
Gareth Williams splits his time between a graphic studio creating artwork and walking vast and beautiful areas around the UK – seems like an ideal plan.
reviews and some feature articles for www.hereisthecity.com and has written for Pride Magazine, thebody.com and Body Positive Magazine, and he was recently featured in FS Magazine.
Alex A is an HIV positive journalist living in Romania.
Joanne Russell is a Reuters-trained journo who put down the pen to become an English teacher.
Tom Matthews has just quit a 15 year long early retirement to return to work a Birmingham’s World AIDS Day Co-ordinator.
J.D Bailey was diagnosed at 2 years of age but found out she was HIV positive aged 11. Now twenty years old, she is currently a student of English at the University of Surrey.
Joel Korn is the support and development Julie Musonda works for Leicestershire AIDS worker at River House Trust, a fund raiser at Support Service and a volunteer member of the LhivE user-led peer support group.
Ian Govendir has been involved with HIV organisations for the past 14 years. He is Chair of AIDS Orphan, a trustee of CARA, and Head of individual giving at the Soldiers Charity. His desire to set up a Charity focusing on Children orphaned by HIV/AIDS came out of the time he spent with the British Red Cross as Head of the fundraising department.
04
JAT - (Jewish Action and Training for Sexual Health), and a facilitator of Living Well’s Positive Self-Management Programme.
Katherine Sladden is the Communications Manager for the National AIDS Trust (NAT)
editor@baseline-hiv.co.uk BASELINE: Great to see you at BHIVA Dr Tristan Barber Jane. The issue looks absolutely stunning; attractive, topical, well written, positive engaging and really is a stunner. You’ve got such a great team and are doing a brilliant job. Well done lovey. Phil – London Hi Robert, Just to let you know that our Monday night Gay Men’s Group continues to flourish, 20 members last night, plus 2 guest speakers. We have had several new members and enquiries from guys who saw our advert in “BASELINE” Many thanks for your continued support. Martin and the GMG team xxxx Jane. Nice new issue dear, picked it up at Chelsea & Westminster! Like the article on liver, however Errol nearly set fire to the kitchen the other night by burning liver he was cooking for the dogs... coincidence? B in London We are an HIV support organisation and will soon be running a PSMP (Peer Support Management Programme) for clients. Would it be possible to have a batch of copies of BASELINE to distribute to our clients? Kind Regards Liz Bayley - Project & Funding Coordinator www.worcesteraidsfoundation.org.uk
JD Bailey’s excellent column was kindly forwarded to me through Magda Conway at CHIVA. She writes in an incredibly clear, accessible and emotive way about many of the issues faced by our younger adolescents as they transition from paediatric to adult services. I would really like to print off her column to give to our younger patients as I think it would really help them to hear her voice – we do get BASELINE here in the adult service but for the younger adolescents a one page print out would be much more accessible. I wonder if that would be possible? with the BASELINE logo and details if that too is possible. If JD Bailey and BASELINE are happy I would really like to circulate her column to the other transition clinics through HYPNet (the HIV Young persons Network). Dr Caroline Foster Imperial College, London Dear Editor I am a community development worker with Yorkshire MESMAC sexual health project in York and your magazine would be of interest to our service users/groups accessing our offices. It’s a great publication with news, views and interesting articles. Thanks in advance and keep up the great work. Pete Blackburn MESMAC
I picked up a copy from Rochdale GUM clinic whilst visiting there recently. I will notify our Director Tom Doyle regarding putting together some contributory articles for you and articles from our service users. Keep well and best wishes – Anon First of all let me compliment you on your magazine. Baseline is a truly useful and welcome medium for all of us living with HIV. Thanks especially for the life stories and updates on treatments. Both for content and graphically, the magazine is - in my view - a success. Kindest regards, Simon - London 05
jabs and gels Chris O’Connor Progress on new HIV prevention technologies (NPT) is at a tipping point BASELINE reports from NAT’s recent expert think tank. ‘Good news-bad news’ moments could see the development of vaccines and microbicidal gels stride ahead or stagnate. “2010 is crucial. There have been so many disappointments to date - donors and policy makers are fatigued,” according to Sheena McCormack, senior scientist, at the Medical Research Council (MRC). May 18th was World AIDS Vaccine Day, thirteen years to the day since President Bill Clinton challenged the world to find an AIDS vaccine. To mark the day the National AIDS Trust gathered international agencies to review the innovations in the fight for HIV protection. Vaccine initiative gets a shot in the arm Fresh impetus has been shot into the vaccine initiative following the results of the Thai Vaccine trial, RV144. The vaccine, using a combination of two compounds provided some protection after the failure of two previous large scale vaccine trials. However, the protection level of 30% is too low for an effective vaccine. “A second generation of vaccines, targeting cellular immunity are going into human trials in the next few years,” says Hester Kuipers of the International AIDS Vaccine Initiative (IAVI). More importantly, say IAVI, is the quest to design vaccines that harness the antibody response - to date every time the body figures out how to target and neutralize HIV the virus simply changes its structure. 06
But a subset of antibodies, known as ‘broadly neutralizing antibodies’ (bNAbs), could hold clues to the design of potentially powerful HIV vaccines. Until recently, only four relatively weak antibodies had been isolated from HIV positive individuals in the developed world. That changed last year when IAVI researchers discovered two new and highly potent antibodies from a volunteer in Africa - as well as the site on HIV to which they attach. Since then, still more bNAbs have been identified - and more are being discovered each month. In combination, these antibodies neutralize virtually all strains of HIV, according to IAVI CEO Seth Berkley. Exciting news but a far cry from being a useable vaccine. Long-term funding for these technologies has to be immune from political fluctuations, say IAVI. In the UK, NAT and its parliamentary partner Whitehouse Consulting are monitoring the new Government’s position on AIDS research.
‘NAT is monitoring the new UK government’s position on AIDS research.’ Microbicide - back on-side? The need for an effective microbicide is desperate. The highest burden of HIV infection in Africa is on young women who are often unable to convince their male partners, especially husbands and regular partners, to use condoms. Poverty, concurrent relationships and gender-based violence increase women’s vulnerability. Even a partially effective microbicide could have a profound impact on the dynamics of HIV transmission. According to mathematical modelling, say CAPRISA (Centre for the AIDS Programme of Research of South Africa), 2.5 million HIV infections could be averted over 3 years if a microbicide with 60% effectiveness was used in 73 low-income countries. Akin to the vaccine experience, microbicides
are looking for a success after a series of failures including the hugely disappointing PRO 2000 gel trial (MDP-301). Hope is now pinned on the trial of the ‘next generation’ tenofovir gel - CAPRISA 004, due to report its findings at the International AIDS Conference in July 2010. See our interview with lead researcher Salim Abdool Kareem on the next page.
using a gel, ‘generally women raved about it, there was a sense of more control, anticipation and pleasure when using the gel - they were actually disappointed when the trial ended.’
Meanwhile, the Microbicide Trials Network’s VOICE study (MTN- 003) is underway and evaluating a tenofovir vaginal gel or a daily tablet as preexposure prophylaxis (PrEP). This trial will involve up to 5,000 women who will be split one of five study groups: -three tablet groups; tenofovir, Truvada or oral placebo -and two vaginal gel groups; tenofovir or placebo
PrEP – focus on high risk groups Giving HIV drugs to HIV negative people in the hope of preventing them acquiring HIV, known as pre-exposure prevention (PrEP) is being looked at in the VOICE trials due to report this year. Both trial the approach in people at higher risk of HIV acquisition: in Peru and Ecuador men who have sex with men and in Thailand injecting drug users will trial tenofovir as pre-exposure protection.
VOICE participants will use the microbicide gel every day unlike in CAPRISA 004 when it is only used before and after sex. Results are expected in 2012. Further down the line, the International Partnership for Microbicides (IPM) is looking at testing a gel of the investigational NNRTI dapivirine, although some researchers are concerned that it is not different enough from Truvada to attract funding. An IPM initiative to test a new approach, the ‘dapivirine vaginal ring’ may demonstrate high acceptance among women. Quick dissolving anti-HIV films are also being developed and rectal tenofovir gel is being researched for use by gay men. The acceptance of gels by women continues to be evaluated by the IPM and the MRC. According to Celine Mias of the IPM, an acceptability trial (PAS1) showed good acceptance. New studies are looking at the acceptability of vaginal gel rings. Sheena McCormack reports that one Ugandan MRC trial showed only a 5-10% negative rating in
“Long-term funding for these technologies has to be immune from political fluctuations.”
Despite the immediate need of these technologies, there is longer term fear of potential ARV (antiretroviral) resistance. If oral PrEP and ARV microbicides show good effect and are rolled out, there is a danger (should an individual become HIV positive) that tenofovir-resistant viruses could circulate. ‘Without monthly testing’, as is the case in the trials, says Sheena McCormack, ‘individuals with very high viral loads could be on monotherapy for some time. As tenofovir is the backbone of treatment programmes in South Africa, where there are far fewer drugs to choose from and many unpleasant ones such as d4T, there is a danger of resistance ‘screw up’.” “It’s a hypothetical but reasonable assumption that by taking tenofovir when infected, a small proportion of people will become resistant,” says Salim Abdool Kareem. “The concern is about people’s therapeutic options three-to-five years down the line. If five years ago you had said Truvada would a first-line therapy in South Africa it would have been hard to believe - five years from now, who knows?” 07
top microbicide researcher speaks to.. Chris O’Connor
Salim Abdool Kareem is the Director of the Centre for the AIDS Programme of Research in South Africa (CAPRISA) and lead investigator of a number of clinical trials investigating microbicides, vaccines and HIV/TB co-infection. Salim spoke to BASELINE from the University of KwaZuluNatal, Durban. Their CAPRISA 004 trial will be the ninth microbicide study he has been involved with since 1994. Salim has staying power. Salim and the team are currently finalising the results of this trial; involving 889 women from KwaZulu-Natal who received either tenofovir vaginal gel or a placebo gel. ‘At stake is the protection of women from HIV transmission - at the moment they are defenceless,’ says Salim, “98 of our women have become infected with HIV during the trial, despite the preventions we offered, this is the incredibly high background of HIV prevalence for young women in the community.” If tenofovir gel shows good protection levels of around 50% it would be a groundbreaking moment, according to Salim; “This will be the first time there is evidence that an ARV is able to prevent HIV transmission in humans. It would open up a whole new field – then it would be critical to have confirmation studies in different populations and different settings, like the VOICE trial.” 08
“If the results are not positive, we have to ask why not? It works in reducing mother-to-child transmission and in animal studies. We have to look at adherence, did we use enough of the drug? Should we use a combination of drugs?” In 2008 South Africa recorded an overall HIV prevalence of 29% in antenatal clinics; four districts had a rate in excess of 40%, three of these were in KwaZulu-Natal. “The problem is so acute and the need so great,’ says Salim, ‘we just have to persuade funders to back us – what can we say to a young woman who comes to us; she has a partner, working away in the mines, he is not faithful and he wants kids - what can we say to her? Be faithful? At the moment we can offer her nothing.”
Retreat Weekends The Lake District November 19th - 21st 2010
Just 9 places left..
book your space now.. Just £75
BASELINE has teamed up with Large Outdoors to offer you the chance to enjoy a weekend away in some of the greatest outdoor locations the UK has to offer. Enjoy the tranquil surroundings of the Gower Peninsula, the Lake District or Snowdonia whilst meeting new friends and enjoying two days of easy guided walks. BASELINE magazine is offering these subsidised weekend breaks to all of our readers. There are even a limited number of free spaces available depending on the individuals’ circumstances. Please contact the LargeOutdoors office on 0161 834 8955 for further details. What you get: Two nights accommodation in an exclusively booked venue, breakfast on both Saturday and Sunday, three course evening meal on Saturday night. Along with a whole host of activities including two days of easy guided walks with optional navigation and local wildlife talks. All this for just £75.
To book log on to:
www.largeoutdoors.com/baseline Future Dates: November 19th - 21st 2010, The Lake District - Only 9 places left March 19th - 20th 2011, Snowdonia, North Wales - Only 18 place available
largeOutdoors.com
news: UK Chris O’Connor
Kids take centre stage at CHIVA
Young people living with HIV were prominent at the recent 4th Annual Conference of the Children’s HIV Association (CHIVA). Opening the session, 18 year old Mathilda Mudyavahu, a voluntary worker at Positively UK (formerly Positively Women), talked about the role of peer support for “hard-to-reach” HIV adolescents, and shared her experiences of moving into adult services. A recurring theme of the day was neuro-cognitive functioning. Indeed the CHIVA Debate was ‘This house believes that antiretrovirals should be started in all HIV-positive children immediately to protect the child’s brain.’ Dean Krechevsky, clinical psychologist from St Mary’s London conducted a case note review measuring cognitive learning in primary school aged HIV positive children - 70 children; 80% of them had African parents, showed evidence of ‘some learning vulnerability…requiring extra support at school.’ The study reported more specific measures of neuro-cognitive functioning and learning are needed. Dr Saye Khoo, Liverpool University, looked at the pharmacology of antiretrovirals in children. He lamented the ‘shocking lack of effort’ in producing data and trials in this field. Tenofovir, for example he said was not available in a child formulation. Di Gibb of the Medical Research Council reported that the Arrow acceptability trial in Africa had 10
confounded observers when it showed that tablets were preferred by mothers and children as well as being one sixth of the cost of syrup formulations. One presentation by Bhanu Williams surprised and concerned many at CHIVA. Research from Imperial College and the Institute of Child Health looked at the first generation of women infected with HIV from birth who are now becoming pregnant. Of 36 pregnancies, 27 were unplanned with a median maternal age of 18. A “worryingly high number”, say the researchers. The conference was closed by the CHIVA youth committee, comprising seven young people living with HIV who shared their ideas for increased involvement in transition from child to adult HIV services. They also outlined their development of a summer camp for young people with HIV. For presentations see http://chiva.org.uk/health/ conferences/previous/4th-annual
Walk for Life celebrates 21st Birthday
Over 2000 walkers took to the streets of London on June 6th, raising over £250,000 so far with sponsorship money continuing to roll in until September. On the 21st anniversary of Europe’s biggest HIV charity walk the theme was fancy dress and the 10 kilometre Walk for Life dragged up and high kicked its way through the capital. On their return, the walkers danced into the evening to ‘The Feeling’, aptly supported by Four Poofs and a Piano.
Obituary: Jim Smith
Jim Smith, a tireless and selfless worker with HIV positive people, passed away recently. He will be greatly missed. Whether as an advocate or carer, his kindness and endless generosity was always there. Jim worked with St Stephens Volunteers and with the Chelsea and Westminster Hospital, the Patients Forum and at The River House Trust.
Goodbye Tracy Barnes
Hillingdon AIDS Response Trust (HART) says goodbye to its much-loved manager Tracy Barnes this month. Tracy is heading to a new life in South America.
Obituary: Haydn Lewis
Haydn Lewis passed away on 21st May 2010. Haydn was an inspirational campaigner for the rights of people with haemophilia and their families whose lives have been devastated by contaminated blood products. Haydn contracted HIV and hepatitis C from contaminated blood and unknowingly passed the HIV virus to his wife Gaynor. To hear Haydn in his own words and his search for truth and justice, please see the interview from BBC’s Newsnight. w w w. b b c. co. u k / b l o g s / n ews n i g ht / susanwatts/2010/05/ 11
news: UK Chris O’Connor
Hep C rates soar in the North Positively Women West Positively UK Cases of hepatitis C (HCV) in the North West of England increased by 30% in 2009 compared to 2008. Since 1999, the North West has consistently had the highest HCV rates across England. In 1997 there were 110 cases. This has increased year on year, with 2195 cases identified in 2009.
According to the Health Protection Agency (HPA) injecting drug users are the ‘key risk group in the region and HCV in this group is the highest in the country.’ It is critical that awareness campaigns are sustained and enhanced so that more people at risk can be tested and treated,’ say the HPA.
is
now
Positively Women is embracing men. After a review of strategy and consultation with service users Positively Women is now Positively UK (PosUK). Positively UK will extend its remit to reach both men and women living with HIV. PosUK says the organisation will retain its core ethos of peer support, with people living with HIV developing and delivering services. Services for men will be created under the new banner of ‘Positively Men’.
It is thought that up to 500,000 people in the UK have been infected with hepatitis C.
Positively UK say ‘specialist’ HIV agencies have recently lost contracts, and at the same time there is a lack of agencies to deliver peer-led work, particularly after the closure of groups such as Positive Place.
Increasing reports of newly acquired HCV among HIV positive men who have sex with men (MSM) have led the HPA to establish an enhanced surveillance system in London, Manchester and the South East. In the first 17 months up to May 2009 there were 109 newly acquired HCV cases. 96% had been diagnosed HIV positive with a mean of four years between diagnoses. Injecting drug use was reported in 17 cases.
According to a statement from PosUK replacing ‘Women’ in the title was a difficult decision to make and the charity acknowledges many people will feel a sense of loss that the organisation is no longer called Positively Women. However, current support groups will remain women only and the charity will continue support for lesbian, bisexual and transgender women. Positively Women magazine will also remain women focused.
According to the HPA, the higher HCV viral load among coinfected men compared to men living only with HCV, may account for the enhanced transmission rates although the rates observed were lower than expected.
PosUK is developing a new service to support women through pregnancy and ante natal care over the next year. A new website www.positivelyuk.org will be launched to coincide with the change of name.
12
Crusaid merges with THT
Terrence Higgins Trust (THT) has merged with the fundraising and grant-making HIV charity Crusaid. Since its inception in 1986 Crusaid and its ‘Walk for Life’ have been a vital part of the HIV landscape in the UK raising over £33 million and releasing 45,000 hardship grants. Jordan Hay, Chief Executive of Crusaid, told BASELINE, the major factor behind the merger had been the economic downturn which had affected the charity’s ability to fundraise. The Crusaid Hardship fund has been closed for six months, “I didn’t want to just survive as a charity, we had to continue the Hardship fund’ said Hay. It made sense, he says to merge with a more robust charity. “It’s a good fit; someone calling THT Direct, could be put through to the Hardship Fund. It will be more cohesive. At the end of the day this is about helping people with HIV forced into poverty, the move will be beneficial for everyone. As a positive man I just wanted Crusaid to survive.” Debbie Holmes, Director of Fundraising at THT, is clear the Crusaid Hardship Fund had to be retained, although no definite date has been set to reopen the Fund for grants. Crusaid spent 40% of its income on its hardship fund and charitable grants. THT’s spends 89% of its income on its charitable activities. Current commitments to Crusaid’s overseas projects will continue to be honoured but no decision has been made about the future. On the fundraising side Holmes is a huge fan of the Walk for Life, citing its diversity as “inspirational.” “We will have consultations on changing the brand name but we don’t want to alienate anyone,” she added.
Law now protects people with HIV from hate crime A clear message that HIV-related hate crime will not be tolerated has been issued by the Crown Prosecution Service (CPS). The CPS has issued revised guidance to make it clear that people with HIV have the same protection as other victims of disability hate crime. The National AIDS Trust and the Equality and Human Rights Commission, raised concerns with the CPS that disability hate crime guidance excluded people living with HIV. The stigmatised nature of HIV means it is vitally important that from the moment of diagnosis people living with HIV are afforded the same protections as other disabled people. Nadine Tilbury, Senior Legal Advisor for the CPS, said: “Crimes against people living with HIV motivated by hostility towards their status - have no place in our society and we will prosecute those responsible robustly and, where there is sufficient evidence to do so, we will apply to the court for more severe sentences.” 11
is your CD4 count over 500 off therapy? Simon Collins, HIV i-Base
An important new study is enrolling in the UK and needs your help. The START study (Strategic Timing of AntiRetroviral Therapy) will look at when to start treatment and many other aspects of HIV. What is the study for? The START study will randomise people to start HIV treatment when their CD4 count is above 500 or to wait until it reaches 350. The study will look at the risks and benefits of earlier compared to later treatment. Why is START so important? Because no other study has researched this.
What are the potential benefits for me? . The first benefit is that you will be contributing to research that will expand our knowledge about HIV. . If you join one of the sub-studies, you may be monitored with tests that are not currently part of routine care, including looking at brain functioning, bone health and heart and lung health. . Monitoring and care in a study are usually more intensive than in the general clinic. You will have the chance to speak more to the doctors or nurses, if you need this. . You could get earlier HIV treatment if you are randomised to this group. . Whether you start treatment immediately or when you CD4 count reaches 350, you may have a wider choice of drugs to choose from.
Starting earlier may help your long-term health. We do not know whether this is at 350, 500, 700, 900 or just when you are diagnosed. This study will show us this. Which treatment can I use? The choice of meds is entirely up to you and your doctor. Because all drugs are provided free in the study, when you come to start treatment, you may have the options to choose newer meds that are not routinely available. 14
Why else would I want to start treatment so early? . The main reason is the believed benefit this could have on your long-term health.
. Your CD4 count will stay higher – because this is always related to how high it is when you start. It may only mean starting a year or two earlier rather than waiting until 350.
. Other benefits include reducing your risk of
THANK YOU for
your interest in this important study!
of s com peop keep
Local contact information
Wh HI
when
Rece HIV or ki
Timing is everything.
We n soon guid
When will the results be known? The study is planned to run for five years. This Wou length of time is thought to be needed because that What are the benefits if I am in the deferred the differences between the two groups may only drop prev This international study, funded by the National Institutes ofbe small. group? of th Health and other collaborating organizations, is being conduct. Deferring treatment ed by INSIGHT (International Network for Strategic Initiatives kidne may give you a year or two in Global HIV Trials) in conjunction with the Copenhagen HIV Programme (CHIP) in Denmark; the Medical Research Council longer to prepare before have to get your (MRC) in the Unitedyou Kingdom; the National Centre in HIV However, a similar sized study, also planned to last Wou Epidemiology and Clinical Research (NCHECR) in Australia; the head around treatment and the importance Washington International Coordinating Center in theof United over five years, in fact answered the study question treat States; and the sponsor, the University of Minnesota. adherence. Although this may only be a year or much earlier - within two years. prev If the results are seen sooner, the study might be deat two difference for many people. shorter. . You may also have the choice of newer medications when you come to start treatment, Where are the study sites? and may benefit from more recent research Your have to visit one of the sites in London, Brighton or Leicester. Your travel costs can be about the best drugs to start with. reimbursed if you decide you want to take part. . Starting at 350 is the current standard of care in the UK and most European countries. If you Many more clinics across the country will join next need to start treatment earlier for any medical year, but getting this first phase enrolled is critical for making sure the study continues. reason, this is of course allowed. transmitting HIV because an undetectable viral load makes you less infectious.
START
Which is the ‘best’ group to get in? This is the crucial question. And it is why we need the study.
For further information, talk to a doctor or nurse at your clinic, or, in confidence, email: START@ctu.mrc.ac.uk
Some experts might think one thing and others another. There is a lot of discussion and opinions but little solid evidence.
If you would like to talk about START or any other treatment issue with an independent community treatment advocate, call the i-Base phoneline: 0808 800 6013. Mon, Tues, Wed: 12.00–4.00pm
This will only come from a large randomised trial – and START is enrolling 4000 people in 30 countries.
15
US move to very early treatment Chris O’Connor Professor Brian Gazzard speaks to BASELINE about the recent US decision to recommend HIV treatment at 500 CD4 count. The United States federal health panel has changes its guidelines on when to start HIV treatment. They now advise starting at CD4 counts of 500 and below - instead of waiting until you CD4 count reaches 350. The panel decision, carried by a narrow majority, puts the US guidelines out of step with many other countries. Many clinicians and treatment advocates - inside and outside the US – remain adamant that there is insufficient evidence to justify this change. So is the UK treatment start line in the right place? Professor Brian Gazzard, Chair of the British HIV Association (BHIVA) Guidelines Committee; told BASELINE, “The US guidelines are based on a US cohort study NA-ACCORD – people in the US are not entitled to free care, so the study looked at the middle classes if you like. All the health issues poorer people face are discounted. If you look at similar studies done in Europe - where we largely have free care – there is no evidence to change.” Guidelines are just that, say treatment advocates and each HIV positive person has the right to decide his/her best treatment path with his/her clinician. However national guidelines can be persuasive. Brian Gazzard points out, “In the past BHIVA has largely been proved correct on treatment decisions – a better record than in the US – for example guidance on AZT monotherapy, efavirenz as firstline treatment. Traditionally BHIVA guidelines have been pretty good.” 16
“In the past BHIVA has largely been proved correct on treatment decisions – a better record than in the US.” In the search for firm evidence most experts including the federal health panel endorse the START trial which will look specifically at this issue. “I am in favour of START, we have a big obligation, we don’t know for certain which is the best route to take. These are not different opinions on how best to get to the pub. When to start taking meds for the rest of your life or feel like you are missing an opportunity to control the virus – these are big decisions.” The city of San Francisco health authority has taken the US guideline changes a stage further to pursue a policy of universal HIV treatment on diagnosis - regardless of CD4 cell count. This ‘Test and Treat’ approach will try and reduce the HIV community’s collective viral load and reduce HIV transmission. Local HIV advocacy group Project Inform has broadly backed the initiative, after wavering now advocate treatment in line with US guidelines at 500 and below. Dana Van Gorder, Project Inform’s Executive Director said, ‘For me there are far too many people in the US and around the world who are positive and not in care, never mind in treatment. There is a lot of pushback on this but it is incumbent on us to ask how are we going to help the 220,000 undiagnosed in the US?’
Blackburn
Choice of HIV and your BODY SHAPE, HEART, LIVER OR KIDNEYS 17th August 6pm THRIVINE @ The Jarman Centre, 53 James Street, BB1 01254 263525
Manchester HIV and your KIDNEYS 5th July 1pm
Choice of HIV and your LIVER, BONES, BODY SHAPE or HEART 6th September 1pm
PROVIDED AS A SERVICE TO MEDICINE BY GILEAD
FREE workshops this summer on HIV and your HEART, KIDNEYS, BONES, LIVER and BODY SHAPE Speaker: Robert Fieldhouse,Editor
Zion Community Resource Centre 339 Stretford Rd, Hulme Manchester, M15 4ZY
Birmingham HIV and your LIVER 13th July 7pm
Choice of HIV and your BONES, BODY SHAPE, HEART or KIDNEYS 10th August 7pm ABPlus, 29-30 Lower Essex Street, B5 0121 622 6471 www.abplus.org.uk
Leeds
HIV and your BODY SHAPE 8th July @ 6pm Choice of HIV and your LIVER, KIDNEYS, HEART or BONE 5th August @ 6pm Skyline, 4th Floor, Gallery House The Headrow, LS1 0113 244 9767 www.leedsskyline.org.uk
Newcastle HIV and your HEART 7th July 3.30pm
Choice of HIV and your LIVER, KIDNEYS, BONE or BODY SHAPE 4th August 3.30pm
For information on the workshops or more details about the venues, contact 07886 159735 or email robertfieldhouse@hotmail.com
Body Positive North East, 12 Upper Princess Square, NE1 This meeting is funded and 0191 232 2855 supported by Gilead Sciences www.newcastle.gov.uk/hivservices.nsf/a/bpne
Be Part of something
hUgE… EMIS: EuropeAN MeN’s Sex survey
JAT (Jewish Action and Training for sexual health) is the only charity in the UK providing sexual health programmes for the whole of the Jewish community. JAT supports Jewish people living with HIV and their carers socially, emotionally and in some circumstances, financially. JAT aims to enable and ensure that Jewish people with HIV are able to live life in the way they wish. JAT runs education workshops nationally in schools, youth clubs, summer camps and also trains youth workers from all the major Jewish youth organisations. The main aim of these education programmes is to empower young people to make safe and informed life choices.
DO IT Now At www.emis-survey.eu EMIS will be the biggest survey of gay men and bisexual men in the world! It is happening in 25 languages across 31 European countries in the summer of 2010. In the UK the survey is co-ordinated by Sigma Research and incorporates the Gay Men’s Sex Survey, also known as Vital Statistics. The survey is completely anonymous.
JAT is currently looking for sessional workers who will be involved in awareness-raising by working with Jewish young people, parents and educators. If you need any assistance, would like to support our work or would like to know more about JAT please go to the website: www.jat-uk.org or call 0208 952 5253 Registered Charity No. 327936
China lifts HIV entry ban
news: global Jane Phillips
Activist jailed for raising HIV awareness
Maxim Popov, an HIV educator has been sentenced to seven years imprisonment in Tashkent (Uzbekistan). He was jailed for the promotion of HIV prevention via leaflets and workshops. The IAS launched a campaign against his imprisonment and called for his immediate release. Mr Popov, 29, has been jailed for attempting to address his country’s growing HIV epidemic with effective, evidence-based approaches. He is the author of brochures which discuss the use of condoms in HIV prevention, the need for sterile needles for injecting drug users, and education on HIV within same-sex relationships. In his training workshops with school teachers, Popov used a text-book published in Kazakhstan with the support of USAID and UNDP. The Uzbek government said that the book constituted an “assault on minors without violence” and ordered the book be incinerated and barred from circulation.
The International AIDS Society (IAS) has applauded China’s announcement that their 20-year-old HIV entry and immigration ban is to be lifted. “With this announcement, China’s entry and immigration policy relative to HIV will be rooted in science and sound public health practices, rather than reflecting the fear and bigotry that drove this policy for so many years,” said Julio Montaner, President of the IAS. “Removing these types of laws around the world is crucial to combating stigma and discrimination against people living with HIV and we hope other nations with such laws and policies in place will soon follow suit.” In the Asian region, many countries have HIVspecific entry or immigration laws. Singapore has a complete ban on all HIV positive non-nationals for entry and immigration. Brunei targets and deports HIV positive foreigners, while Australia requires HIV testing for permanent visa applicants over the age of 15. South Korea announced changes to its entry and immigration policy on January 1, 2010, but clarification on its amended laws is still awaited. Worldwide, some 66 countries have some sort of HIV-specific laws that restrict the entry, stay or residence of people living with HIV. For more information on countries with HIV entry, stay and residence restrictions, go to: www.hivrestrictions.org
According to UNAIDS, Uzbekistan has one of the world’s fastest-rising HIV infection rates. About 16,000 cases of HIV were reported in 2009 — more than an eleven-fold increase from 1,400 cases in 2001. 19
PROVIDED AS A SERVICE TO MEDICINE BY GILEAD
FREE workshops this summer on
HIV and your HEART, KIDNEYS, BONES, LIVER and BODY SHAPE
Facilitators: Badru Male & Elias Phiri (AAEGRO)
South London
AAEGRO 14 Willis Road Croydon CR0 0DY 26th June 2010, from 1pm 3rd July 2010, from 1pm For more information contact Mark Mpungu- 07828 114256.
Miles Stones Peer Support St Winefride’s Church Hall Bridges Road South Wimbledon London SW19 1SB 5th July 2010, from 6pm 9th August 2010, from 6pm For more information contact: Eric Simpson Tel. 07881 943324
Hope Gate Trust
Bridge Park Community Leisure Centre Harrow Road Stonebridge Park London NW10 0RG 8th & 29th September 2010 AT 18:00 GMT For more information contact: Fitzgodfrey Chilfya: Tel.: Telephone: 02080900424/5-6 Email: fchilufya@hopegate.org.uk For more information about the HIV and Body, please contact: Badru Male: badrumale@hotmail.com or Tel: 07956047596 Elias Phiri: aaegro2000@yahoo.co.uk Tel: 07914855206
This meeting is funded and supported by Gilead Sciences
Community Development Organisation
(formerly African Families Support Services) 1-3 The Pavement Grovehill House Grovehill Road Redhill, RH1 6TW 6th August 2010, from 5pm 3rd September 2010, from 5pm For more information contact: Mark Mpungu- 07828 114256
Put a ring on it
news: global Jane Phillips
HIV epidemic emerging in the Philippines Low condom use, needle sharing and a rise in casual sex and prostitution may unleash an HIV epidemic in the Philippines, according to a new study published in the Journal of the International AIDS Society (JAIDS).
Unlike surrounding countries, the spread of HIV in the Philippines has been seen as “low and slow” because of the geography, low intravenous drug use, sexual conservatism and high male circumcision rates. But, authors said “...a large, increasing and generalised epidemic HIV was possible now because of the presence of many factors. “ These include a low rate of condom use; unsafe practices among intravenous drug users; large migration rates; increasing trends in extramarital and premarital sex; a lack of education and common misconceptions about HIV/AIDS.” The report also focused on the 7.5 million Filipinos working abroad in 170 countries (who make up make up 30-35% of all HIV cases reported in the country) and the likelihood of Filipino workers being a high source of new HIV cases upon their return home. The Philippines has the lowest rate of condom use in Asia - just 20 to 30% among groups at higher risk of HIV infection such as sex workers.
The AIDS Foundation of Chicago’s new campaign promotes the FC2, the new female condom. But it’s not just for the single ladies—men who have sex with men can use it too. During the National Women and Girls HIV/ AIDS Awareness Day, a coalition of AIDS service organisations, launched the Chicago Female Condom Campaign’s “Put a Ring on It!” (taken from Beyonce’s hit song, “Single Ladies”). While female condoms are not new, the FC2 is an improved version. It is seamless, made of a hypoallergenic synthetic rubber, which can be used with any kind of lubricant (as opposed to male latex condoms which can only be used with a water-based lube). Female condoms are open-ended tubes but have two rings—one on each end. Before sex, the receptive partner inserts the smaller of the two rings into the vagina or anus so that the outer ring protrudes. The inner ring can be removed for anal sex. “Our campaign has an explicit section [describing] how the female condom can be used for anal intercourse and among gay men...” www.ringonit.org
21
starting hep C therapy Jane Phillips
Topline: . Starting HCV therapy can be a daunting prospect
. Unlike HIV, HCV treatment will be a short course . Unlike HIV, some people are cured with current hepatitis therapy
. Starting HCV therapy soon after you contract HCV may offer you the best chance of a cure
Hepatitis C was first identified in 1989. It is spread through blood-to-blood contact and it may take many years for symptoms to develop. It may also be contracted sexually. Unlike hepatitis A and B there is no vaccine to protect you, but treatments are available. Unlike HIV it is possible for you to cure hepatitis C with a short course of treatment. People who complete hepatitis C treatment and have no measurable hepatitis C virus in their blood six months after completing the course are called sustained viral responders. These people are said to be cured. There are six different forms or genotypes of HCV. Whilst the genotypes do not predict how serious your disease may be, they can predict how long you will need to be treated for and how likely you are to get a cure from treatment. Genotype 1: found mainly in Europe and North America, usually needs a longer course of treatment and is less likely to respond to current treatment. Genotype 2 and 3: found mainly in Europe, North America but also widely throughout the Far East 22
“Life’s challenges are not supposed to paralyse you; they’re supposed to help you discover who you are.”
and Australia. These strains respond to treatment more easily and require a shorter treatment course. Genotype 4: found most often in the Middle East and Africa – like genotype 1 it requires longer treatment and is less likely to be cured with current treatment. Genotype 5 and 6: are much rarer (6 is often seen in Egypt) and requires longer treatment is needed in chronic (established infection). Typically, people who have chronic hepatitis C genotype 2 or 3 will need treatment for 24 weeks. People who have genotype 1, 4, 5 or 6 will need treatment for 48 weeks.
People vary widely as to how quickly their liver condition worsens, and it is difficult to predict.Some factors have been linked to faster progression:
. The older you are at infection . Being HIV positive . Being male . Drinking alcohol . Co-infection with hepatitis B (HBV), hepatitis D
Ribavirin (tablets or capsules) are taken twice a day. Ribavirin alone does not work against HCV, it needs to be taken alongside interferon. There are two licensed pegylated interferon injections, and 2 types of ribavirin tablets: Pegasys (peginterferon alpha-2a) – a prefilled weekly injection and Copegus (ribavirin) 200mg tablets (dosed between 800mg to 1200mg in two separate doses).
(HDV)
. Being overweight . Having diabetes . Smoking
Treatments for HCV There are two types of drugs to treat HCV – interferon and ribavirin. Interferon is a natural protein which is made by your body to fight viruses (but we do not produce enough by ourselves to combat HCV). Interferon needs to be injected subcutaneously, (that means under your skin normally into the fat in your stomach). Standard interferon doesn’t last long in the body so needs to be given at least three times a week. A new longer lasting pegylated interferon became available a few years ago. Pegylated interferon has been modified so it lasts longer in your body – it has to be injected once a week subcutaneously.
PegIntron Redipen (peginterferon alpha-2b) is a weight-based injection pen, and Rebetol (ribavirin tablets) 200mg (dosed from 800mg – 1400mg in two separate doses. If you are given interferon alone it is likely that you cannot tolerate ribavirin or your hepatitis has been picked up very soon after infection. If you are uncertain about any aspect of the medication you are prescribed it is always best to discuss this with your healthcare team. You can always get advice from a community treatment advisor at a voluntary sector agency. It is important to avoid pregnancy before, during and 6 months after your treatment. For some people the side effects of hepatitis C treatment can be very hard to live with. At worst you may experience extreme tiredness, depression, weight loss, flu-like symptoms. Some people benefit by also taking antidepressants or medication to treat anaemia (low red blood cells).
Genotypes
Genotypes
Treatment
Treatment 23
starting hep C therapy Jane Phillips
Monitoring Tests Alongside a range of liver function tests you may need a liver biopsy (where a small amount of liver tissue is removed to see how much fibrosis (or scarring) is present. More hospitals now have access to a fibroscan which measures the stiffness of your liver. This may avoid you needing to have a liver biopsy. You will need a blood test to identify which genotype of HCV you have as well as a HCV viral load test to measure the amount of HCV in your blood before you start treatment. Anyone starting interferon therapy should have an eye test (especially if you are diabetic). At 12 weeks you will be tested to see how well you are responding to treatment. Ideally your HCV viral load should be undetectable at this time. If you have not had a good enough response your doctor may advise you to stop therapy. At six months you will have a HCV viral load test to see if the virus has been cured.
New medications New HCV drugs, currently in late stage clinical trials, may be available in the coming years. These will have to be taken alongside existing treatments. Right now we don’t know very much about how well these new treatments will work in people living with HIV and HCV. 24
What if I am HIV positive and just diagnosed with hep C? If you are living with HIV and have contracted HCV recently (in the last six months) you have a window of opportunity to take interferon and ribavirin treatment for a shorter period than people who have established (chronic) HCV. Taking treatment soon after infection with HCV may also increase the chance that you will clear the virus completely. One European study found no additional benefit to hepatitis C treatment longer than 24 weeks if people with HVI started within six months of infection. Many people with HIV have had acute (recent) HCV infection picked up by abnormalities in their regular blood work (your liver function is often measured alongside your CD4 count and viral load). A rise in liver function can suggest recent HCV infection. If you find yourself in this situation, think seriously about HCV treatment.
Baseline: . Be prepared for the side effects . Commit to lots of hospital appointments . Eat well, rest and have a good support system in place questions and notes ready to take with you each time you visit the clinic
. Have
Lifeline: For further information see: www.hepctrust.org.uk www.hcvsupport.org www.beincharge.com www.pegassist.com
One hundred per cent dedicated to HIV medicines and research, focused on the needs of those affected by HIV, and committed to innovation.
UK/HIV/0066/10 June 2010
www.viivhealthcare.com
The BASELINE team attended the Second Joint Conference of the British HIV Association (BHIVA) with the British Association for Sexual Health and HIV (BASHH) in April at the Manchester Central Convention Complex. Around one thousand medics, HIV journalists and community advocates attended the four day meeting. View the presentations online at: www.bhiva.org/AnnualConference2010Presentations.aspx We would like to thank Gilead Sciences Limited, BristolMyers Squibb and Merck Sharp & Dohme Limited for making our attendance possible.
Top Nurse Nicky Perry with Robert Fieldhouse
BASELINE’s Jane Phillips & Chris O’Connor
Crusaid’s Ian Leckie with Robert Fieldhouse
Top nurse Sheila Morris with Gilead’s Stephen Head and Debbie Flanagan
ViiV Healthcare’s Kyle Patel
Veronica Oakeshott APPGA
Viiv Healthcare’s Anna Lawson and Mortimer Market Centre’s Dr Tristian Barber
The stand looked great. Thanks Myck 26
Robert Fieldhouse with Ben Cromarty, North Yorks AIDS Action
* Providing specialist and peer support, advocacy and information
* Promoting positive attitudes and equitable access to health
* Promoting involvement, voice and visibility
* Campaigning against discrimination
A national charity providing peer led support to people living with HIV
www.positivelyuk.org email: info@positivelyuk.org call: 020 7713 0444
Registered charity number: 1007685
347-349 City Road, London EC1V 1LR
the journey... part 3 Julie Musonda
Life, for the last five years, has been like the biggest and fastest rollercoaster at Blackpool Pleasure Beach. The lows were deep, dark and raining and the highs were warming, with blue skies and pretty flowers. Disclosure was one of the biggest issues of my illness. Who can I tell? Who needs to know?
suddenly brought home to me, that even in my sheltered life, I’d taken stupid risks whilst on my travels abroad. Risks, I’m sure we’ve all taken at one time or another.
I’ve come a long way from the days of carrying spray bleach with me when I went to stay in a hotel for the weekend or washing fresh foods with sterilising fluid as I didn’t want to die of food poisoning! The internet was a minefield of information, some true and some absolute crap but all very believable when you’re vulnerable.
I eventually confided in my very best friend and to this day she has been my rock. For that, Michelle, I thank you and love you for the support you have given me over the past five years. Slowly I told key members of my family who have all remained faithful to me. But my parents, well that’s another story. I strived all my life not to disappoint or bring shame on my parents and here I was about to blow their world apart. I chickened out and to this day they don’t know. They don’t need to know. My only wish is I could be honest enough to tell everyone, however, you wouldn’t introduce yourself as “My name’s Julie. I’m a diabetic.” So actually why does anyone need to know? All those who are important to me know my diagnosis, and to the rest of the world…… it’s not important and none of their business.
A year after I got diagnosed I married my perpetrator; for love I thought at the time. But in hindsight I’d now say it was for security and out of anxiety about dropping this particular bombshell to a prospective new beau. It was hard enough, at my age to mention to a new sexual partner that he should use a condom. I was sterilised when I was 23 years old and condoms never seemed necessary. Hindsight is such a beautiful gift. It 28
‘I’ve come a long way from the days of carrying spray bleach.’
You WANT To geT oN BuT PeoPLe WoN’T LeT You
let’s HIV talk STIGMA The person depicted in this advert is a model.
Talking to people who understand your concerns can really help. Contact one of the groups below (or your local HIV community organisation) for friendly confidential advice. w: nat.org.uk t: 020 7814 6767 w: ahpn.org t: 020 7017 8910
w: tht.org.uk t: 0845 122 1200 w: positivelywomen.org.uk t: 020 7713 0222
Date of preparation: September 2009 AXKAL092647
A Promise for Life
thick as thieves: HIV and stigma Chris O’Connor The Stigma Index may sound like the latest thriller from Dan Brown but ‘The People Living With HIV Stigma Index’ is far from a light read and has been received as a damning report into the stigma and discrimination many positive people in the UK face today. The community research known as Stigma Index comes at a time when the consequences of HIV stigma are increasingly being recognised. Despite advances in antiretroviral treatment, late diagnosis is still common and a significant, stable proportion of people are still not coming forward for HIV testing: with stigma playing a big part. Recent surveys in the US and Australia made for shocking reading. A survey in March 2009 by GMHC in New York compared attitudes now to those a decade ago. Many perceptions have not changed at all - many Americans still do not want to work with an HIV positive person, share an apartment with them or have an HIV positive individual teaching their children. When the focus is more specific the results can be even more depressing for positive people. A study from 2007 by the American Foundation for AIDS Research (amFAR) captured the attitudes of five thousand Americans on HIV and women. In response to the question; should a woman with the following conditions have children? 59% said women with cancer should, 47% said women with depression should, 37% said women with multiple sclerosis should, 20% said women with hepatitis C should and 19% said women with Down’s syndrome should. 30
Yet only 14% of respondents felt that HIV positive women should have children, despite the fact that medication exists to prevent mother-to-child HIV transmission.
The inside view
So what do HIV positive people in the UK say about being on the receiving end of stigma and discrimination? During 2009 the Stigma Index interviewed 867 people living with HIV in the UK about their experiences over a 12 month period. One in five had been threatened, harassed or verbally abused according to the Index. The same amount said they had been denied medical treatment because they had HIV, with GPs, and dentists being identified in particular. Almost 60% per cent of participants had doubts that their medical records were being kept confidential.
Sigma on stigma
Research in this area is nothing new. In the UK, Sigma Research has produced a raft of data into stigma and discrimination over the years, mostly using questionnaires and online ‘self completion’ research models.
So what is so different about the Stigma Index?
Kevin Osborne, Senior HIV Advisor, International Planned Parenthood Federation (IPPF), one of the Index partners, argues, “It’s unique; people with HIV have never been asked directly and systematically about the stigma they face and the questions were put by other HIV positive people. We are asking the same questions in 17 other countries, this will give us a baseline monitoring tool to analyse and compare changes to stigma over time.”
The process of gathering this information is as important as the end product say Stigma Index. They championed a community research model, and trained 35 positive people to interview the participants in the Index. “It is HIV positive people saying ‘I am involved in the process,” the researchers are HIV positive, the analysts are positive - this way people feel they have a much bigger buy-in,’ says Osborne.
“1 in 5 had been denied medical treatment” The overwhelming majority of the 867 participants were people living with HIV who are accessing HIV service organisations, and not those outside the support system. A criticism of previous studies has been that groups such as women and migrants are often under represented. Stigma Index say their interviews included hard to reach groups such as ex-prisoners, men who have sex with men, sex workers, migrants documented and un-documented, “Did we reach all corners? No - we didn’t get to some people, we need more people in rural areas for example. However, we feel there has been a word of mouth effect - we will get more next time.” The initiative is a partnership of two international groups, the IPPF, the Global Network of People Living with HIV (GNP+) and the International Community of Women with HIV/AIDS (ICW) together with UNAIDS. Funding the initiative is the M.A.C AIDS Fund (M.A.C Cosmetics) who have committed £300,000 to producing the Stigma Index in the UK.
Giving the index finger to stigma launch Annie Lennox, singer songwriter and activist; Professor Jane Anderson, Homerton Hospital and David Borrow MP, then Chairman of the AllParty Parliamentary Group on AIDS, launched the Stigma Index report at the House of Commons. The UK Secretary of State for Health at the time, Andy Burnham MP, was due to address the launch but was detained by ‘unavoidable parliamentary business.’ In a statement to BASELINE Burnham said: ‘I welcome this report…tackling HIV stigma is everyone’s business. We will carefully consider this reports’ findings.’ A subsequent meeting with the DH was requested by the Stigma Index. This did take place but ministers have all since been replaced in the General Election. Burnham is now running for the Labour leadership. Stigma Index want to see the current orientation of UK HIV services realigned - although 88% per cent of participants knew of organisations to access help, only 28% had actually sought their help. HIV and criminalisation is another area that crystallises prejudice and discrimination and has to be fought. Not all the data was bad news, the report highlighted that people living with HIV are ready to take responsibility - over 60% of people in the Index said that they felt they could change attitudes if they themselves challenged discrimination.
31
thick as thieves: HIV and stigma Chris O’Connor
So what’s been going on in the UK? In 2001 the UK government published the first ever strategy for sexual health and HIV; The National Strategy for Sexual Health. One of its five key aims was reducing stigma around HIV and sexually transmitted infections. Apart from reducing social exclusion, the strategy acknowledged that stigma hindered access to services, HIV diagnosis and fuelled onward transmission. It took a while but in 2006 the Department of Health (DH) launched a specific action plan to tackle HIV-related stigma. The DH spent £250,000 with National AIDS Trust (NAT), Terrence Higgins Trust (THT), NAM, MedFASH and the African HIV Policy Network (AHPN). Through these organisations stigma would be tackled in the media, workplace, education of health care workers, gay men and in African communities. The Tackling HIV and Discrimination programme of work ran until 2008. Since then the DH has taken an ad hoc approach to challenging HIV stigma, funding AHPN to develop two toolkits to help Christian and Muslim faith leaders tackle HIV discrimination – launched in 2009. The DH has supported projects where stigma and discrimination are addressed incidentally to the major aims of the organisation project; for example by funding a number of communitybased HIV testing services. Recently the DH funded a publication by MedFASH aimed at clinicians to support them offering HIV testing in a range of hospital settings, as well as the ongoing work of THT and NAT. The DH has also supported a reprint of NAM’s HIV and Stigma booklet. Recent legislative changes are laying the foundations against HIV prejudice: the repeal of Section 28, the equalisation of the age of consent, 32
civil partnerships and the Disability Discrimination Act of 2005 have all helped to address HIV-related stigma. Most observers agree that much HIV stigma can be homophobic in origin and the recent legislation can undoubtedly change attitudes. The HIV stigma faced by migrants to the UK, within their own community and outside appears to be lower on the DH agenda. Although the mantra ‘attitudes are slowly changing’ is often cited by observers, dedicated money and focussed strategy is wanted by positive people and representatives who spoke to BASELINE. The protection offered by the law under the Hate Crime category by the Crown Prosecution Service has been widely welcomed. The area where the DH might directly effect change in attitudes could be in employment. Many people who contacted BASELINE spoke of the understanding and professionalism of workers in the NHS when dealing with people living with HIV. However, some noted attitudes, as identified by the Stigma Index, that left them feeling marginalised. With 1.3 million employees the NHS could start fighting stigma far closer to home.
Stigma index latest
It’s been fairly quiet on the Stigma Index front since the high profile Parliamentary launch last year. Activity is expected to peak again in August once the raw data have been put together with people’s stories. The Stigma Index hopes that making the complete data sets available to HIV community groups may help organisations bid for funds to challenge HIV stigma. For information contact Lucy StackpoolMoore at the International Planned Parent Federation. Email: lstackpoolmoore@ippf.org A 45-minute film based on the experiences of the Stigma Index’s HIV positive researchers is soon to be previewed on YouTube and the Stigma Index website: www.youtube.com www.stigmaindex.org This article was sponsored by Abbott Laboratories
launches online August 1
www.baseline-hiv.co.uk
Got an event or product you’d like us to promote? Email editor@baseline-hiv.co.uk
Models Needed
THT is looking for under 21’s who identify themselves as lesbian or bisexual to model for a new website called Talksafe. The website is where young people can go for advice on all aspects of growing up. Under 16s will need parental consent. If you are interested contact: tel: 020 7812 1626, or email: allan.latty@tht.org.uk
Funk for Life
Swedish funk and jazz trombone player Nils Landgren’s project to inspire and nourish children with music making has already seen some incredible results and one euro from each CD sold will be donated to the aid organisation for this unique project in Kibera, Nairobi, one of the biggest slums in Africa. Buy it at www.amazon.co.uk
Positively – Courtney Sheinmel
Captured with honesty and perception, the complicated thoughts of thirteen-year-old Emmy Price as she navigates her life during difficult months following her mother’s death from AIDS. Emmy, who’s HIV-positive, not only must deal with the loss of the person she loved the most, but must face her own illness with a new sense of heart-wrenching reality. Buy it at www.amazon.co.uk 34
Please complete GP survey
The HIV Forum Link Project is seeking the help of positive people to shape future medical care services. Just complete a five minute online survey about GP services and how you want them to develop. This information will help equip patient groups consulting the NHS on the future delivery of Primary Care services. The survey is one of the first ventures undertaken by the new HIV Positive Link Forum Project, an umbrella organisation to support HIV positive patient groups across the UK and to help people start new patient groups. The website is at www.forum-link.org The survey is at: www.forum-link.org/research/gp/survey More info is available from Paul Decle on 020 7738 0258, 07919 554 635 or at: paul.decle@forum-link.org
Canary – ETT English Touring Theatre
Written by the multi award-winning Jonathan Harvey (Beautiful Thing, Gimme Gimme Gimme, Hushabye Mountain & Coronation Street), Canary is a deeply moving, funny, uplifting and often magical story about love, honesty and being brave enough to sing out at the top of your voice - with style. Dates throughout UK during June and July. www.ett.org.uk/Productions/2010/Canary
The Spider and the Fly
Adrienne Seed’s autobiography The Spider and the Fly is a moving love story with a terrible twist to the tale. Spanning continents and decades, this is the voyage of a young girl to a woman, entangled in the web of a fascinating but ultimately destructive relationship. Told with humour, poetry and pathos, this is a true story that you won’t forget, and one which may even save your life. Buy it at www.lulu.com
35
Shift from AIDS to non-AIDS deaths continues
news: treatment Robert Fieldhouse
First maturation inhibitor in development halted
Myriad Genetics has announced it is suspending its HIV drug development programme. The company says it is taking this step “for strategic, business reasons; and a reduction in workforce.” Myriad had been developing a maturation inhibitor called bevirimat (MPC-4326, PA-457) after purchasing the rights to the drug from Panacos Pharmaceuticals in 2009.
Death rates among people living with HIV fell dramatically after the introduction of antiretroviral therapy in the mid’ 1990s. Over the past 10 years the most common causes of death have shifted from AIDS-related opportunistic infections such as pneumocystis carinii pneumonia and Kaposi’s sarcoma to non-AIDS conditions such as heart and liver disease, and non-AIDS-defining cancers such as lung cancer, according to the findings from the large Antiretroviral Therapy Cohort Collaboration. Overall, 5% of the patients in the study died. Whilst AIDS accounted for almost half of all deaths, the most common non-AIDS deaths were caused by non-AIDS cancers (11.8%); non-AIDS infections (8.2%); causes related to violence or drug use (7.7%); liver disease (7.0%); heart disease (6.5%).
ART cuts HIV transmission 90 per cent in heterosexuals
People living with HIV taking antiretroviral therapy (ART) are 92% less likely than untreated individuals to transmit HIV to their heterosexual sexual partners, according to an African study reported in The Lancet. Among untreated partners, greater transmission risk was associated with lower CD4 cell count and higher HIV viral load. The researchers concluded that ART could be an effective strategy for achieving population-level reductions in HIV transmission.
End of the road for Apricitabine
On May 10, the biotechnology company Avexa announced that it is halting development of its investigational nucleoside reverse transcriptase inhibitor (NRTI) ‘apricitabine’ after failing to find a licensing partner. Apricitabine demonstrated potent antiviral activity, good tolerability, and minimal resistance in clinical trials , but its twicedaily dosing placed it at a disadvantage compared to currently available once-daily NRTIs. 36
Morphine may offer protection against HIV-related brain impairment
Morphine, a pain-relieving drug derived from opium poppies may help protect the brain from HIV-related damage by interfering with HIV’s ability to enter cells, according to a study in mice. The researchers were keen to emphasise that people should not use morphine or similar drugs like heroin to protect their brain, but suggested these findings may offer clues for designing future drugs to prevent neurocognitive impairment in people with HIV.
Gene linked to long-term non Second generation “Atripla” on progression identified the way People with HIV who naturally maintain a very low HIV viral load without taking antiretroviral therapy and don’t experience disease progressionknown as “elite controllers” are likely to carry a gene variation, HLA B57, that is associated with a stronger and more effective immune response against HIV, according to a study recently published in Nature. On emergence from the thymus (where CD4 T cells mature), T-cells of elite controllers appear to be primed to recognise and respond strongly to HIV proteins.
Frequent drinkers lose CD4 cells
People with HIV who drink alcohol frequently (two or more drinks per day) are almost 3 times more likely than infrequent or non-drinkers to have their cell count fall to 200 cells/mm3 or less. The risk was 7-fold higher among people not taking antiretroviral therapy. Frequent drinkers also had higher HIV viral loads on average. The researchers suggested this was likely related to their poor treatment adherence.
High homocysteine levels common among people on HIV meds People with HIV taking antiretroviral therapy often experience increased levels of homocysteine -- an amino acid that may damage blood vessels and contribute to increased cardiovascular risk after six months of HIV treatment, according to research published in JAIDS. It currently remains unclear if lowering homocysteine levels can prevent heart attacks and strokes. The researchers suggested that treatments to lower homocysteine levels should be evaluated in people with HIV. But, they concluded, studies of various approaches (such as vitamin B supplementation) in the HIV negative population have shown ‘...variable degrees of success.’
Gilead Sciences recently announced that it is moving ahead with the development of a oncedaily single-pill coformulation of their nucleoside/ nucleotide reverse transcriptase inhibitors tenofovir and FTC (Emtriva) -the 2 drugs in the Truvada combo -plus Tibotec’s investigational non-nucleoside reverse transcriptase inhibitor rilpivirine (TMC278), which recently demonstrated promising efficacy in a late stage clinical trial. Rilpilvirine is Tibotec’s second NNRTI. The new coformulated drug should be available in Europe at the end of next year. The companies are also working toward an agreement to make the fixed-dose combination of Truvada and TMC278 available in the developing world.
Sideline: Protease inhibitor: a class of HIV drugs that inhibit HIV’s protease enzyme HIV viral load: the amount of the virus’ genetic material (RNA) in a tiny amount of your blood CD4 count: the amount of immune system coordinating cells in a tiny amount of your blood Antiretroviral drugs: drugs which inhibit HIV, which is a retrovirus NRTIs or nucleoside analogues: a class of HIV drugs that inhibits HIV’s reverse transcriptase enzyme which translates viral RNA into DNA. Maturation inhibitor: a drug class which binds to the HIV protein gag and renders the resulting virus particles incapable of infecting other cells. Neurocognitive impairment: a brain disorder in which thinking abilities are mildly impaired. Kaposi’s sarcoma (KS): a tumour caused by human herpes virus 8 (HHV8) Pneumocystis carinii pneumonia: a form of pneumonia. Pneumocystis is found in the lungs of healthy people but being an opportunistic infection causes a lung infection in people with lowered immunity. Thymus: the place where T-lymphocytes or T-cells (immune cells) are produced. 37
Aids took their family
…don’t let it take their future too. Eight-year-old twins, Lily and Isaac lost their mother to AIDS. Isaac escaped the virus. Lily didn’t. Despite her age and poverty their grandmother tried to care for them. But it was too much and she had to hand her daughter’s babies over to an orphanage. There are 33,000 AIDS orphans just like Lily and Isaac in Mombassa, Kenya. Please help us to help them. Please give online now at:
www.aidsorphan.net Aids Orphan UK Trust is a company limited by guarantee in England 7034018. Registered charity number 1133364. Registered office: Hanover House, 14 Hanover Square, London, W1S 1HP.
introducing AIDS Orphan (UK Trust) Ian Govendir
AIDS Orphan became a registered charity in December 2009. The organisation was established in response to the growing AIDS epidemic worldwide. UNAIDS estimates by 2015 there will be more than 25 million children who face being orphaned by HIV. This must count as one of the biggest humanitarian disasters the world has ever known. A group of concerned people decided that something had to be done so we set up AIDS Orphan as a UK-based NGO. AIDS Orphan is a grant making organisation that works with partner organisations in the developing world where the problem is more predominant. While we are in our infancy we believe that there is room for another charity that dedicates all of its work to helping children who have lost their parents. As such, it was decided to concentrate our work on the psychological support of children. Our initial project is in Mombasa, Kenya, where it is estimated there are 33,000 AIDS orphans. We have a network of people and partners on the ground who deliver much needed help. We are currently working with an established children’s home and Mombasa hospital. When setting up the charity it soon became very evident that 80% of children who have been orphaned by HIV/AIDS were HIV positive. All of the children face enormous challenges in their life, not having parents and having HIV.
There are huge issues to be overcome:
. . . .
Telling the children they are HIV positive How to deal with stigma How to be able to disclose their status in a confident way How to act as responsible sexually mature adults
The children usually live with their extended family who struggles to feed an extra mouth. Because they are seen as AIDS orphans they often become neglected and sometimes do not eat and are sent out to work. Even when attending school they often cannot afford to have school uniforms or a meal. As a last resort some children become abandoned and they end up in an orphanage. The children are faced with enormous psychological challenges around abandonment. Our first programme is based in a major slum area of Mombasa where we are setting up a programme to train local children’s home staff to deliver counselling to the children. This is being done by sending out qualified psychologists from the UK to train up home staff. We are also training nurses from Mombasa hospital to deliver courses of counselling to the affected children. We will work with children in homes to identify the neediest children in the surrounding slum areas where we feel the greatest need is. For more information on the charity and ways to help, please go to www.aidsorphan.net or call Ian on 020 7 624 3011 39
my fight for universal access Alex A from Romania
Disruption to the antiretroviral treatment supply in Romania due to lack of funding has recently made headlines within the country and abroad. The local NGOs have put up an unprecedented campaign to raise awareness of this situation and to make the local authorities take responsibility for their actions. Most of those affected by these decisions were powerless in the face of the inevitable. As a person living with HIV in Romania for ten years and who has been on medication for seven years without interruption, I faced a crucial decision. Here is the story of my journey within the intricate maze of a rotten medical system. 40
I was diagnosed HIV positive in the year 2000. That year the world did not come to an end. Nevertheless my own little universe did start to crumble to pieces. It took me more than a decade to reconstruct the puzzle and I am still not done. To those who think that there is nothing worse than receiving a death sentence at 19, I suggest they think twice. In my case, the place where I live gives the story a whole new twist; being HIV positive in Romania is no walk in the park. Romania became a member of the European Union in 2007. Everybody looked upon that event with the eyes of a child receiving a Christmas present. For me, as a person living with HIV it meant not only freedom, but the promise of a future. The opportunity to take my whole life to the next level came with a scholarship that I won the following year. Within the nine months that I spent abroad the only thing that kept me connected to the old Romanian reality was my HIV treatment. Babies get their vital fluids through the umbilical cord. I got my ARVs through the mail system. Every two months my mother made it possible for me to see my survival kit arrive safely at its destination. As soon as the parcel was in my hands I felt blessed. Still, every now and then images from home kept haunting me. Among the hardest to forget was the anti-rabies facility where our blood would be drawn. Strangely enough this did not take place in the main building of the clinic, but in a smelly basement covered in damp.
But the main building of the infectious diseases hospital wasn’t an architectural marvel either. For years it made me think of scenes from movies about World War II. I kept remembering the day when the new windows were put in. Everybody was in awe. Not one person seemed to be bothered about the falling coating or the smoked down façade. For them, those were just minor details, but I couldn’t disagree more. The main building of our infectious diseases hospital did not see any major refurbishment in years. However during my time spent abroad, even I became less sensitive to those shortcomings. Distance, both spatial and temporary did its healing magic on me and I began to think that I was finally living my dream. I was away from the past, well grounded in a present that fulfilled me and that made me able to envisage a better future. Unfortunately this state of balance didn’t last for too long. When the scholarship ended and I had to go back home, it felt like being diagnosed all over again. After nine months of absence, home sweet home welcomed me with a crooked smile and plenty of disappointments. I had to restart my visits to the clinic and the old depression kicked back in stronger than before. Each time I entered the hospital yard I saw the same picture. It was the desolating image of a cold metal fence placed where a clinic for HIV positive patients was supposed to be built by a local NGO using external funding. 41
my fight for universal access Alex A from Romania I couldn’t even remember the year when they began the construction. It was so long ago that hardly anyone knew the reason why the project had been abandoned. Nowadays only the fence and some construction material scattered on an empty ground remain; the silent witnesses of the repeated failures of our beloved medical system. But these failures were not my own. Sure I was directly affected by them, but I still thought I could do something to turn things around. That is why I decided to try to leave the country again as a volunteer. Little did I know at that moment that the system had yet another blow prepared especially for me. Ironically enough I got hit right in the face on April Fool`s Day 2010 when my doctor announced, without any ceremonial undertone, that I was not going to receive my treatment for that month due to a delay in the payments to the drug distribution company. Apparently I had absolutely no say in this. Immediately it became crystal clear to me that I couldn’t stay put and let others play with my life. So I decided right there and then that I must take the whole matter in my own hands. Instead of constantly worrying about the effects of the treatment interruption on my general health, I took immediate action. Through putting all my energy into research, within only a few days, I got to the core of the entire mess. I found out that our government had actually been covering ART with domestic resources for the past few years. This information contradicted my previous knowledge that the funding for ARVs in our country came from external sources like the 42
Global Fund. Now that we were left on our own, the lives of so many PLWHA were in great danger. We were simply the victims of a very defective resource management plan which together with the international economic crisis had turned into a disastrous cocktail. With my head bursting from all the turmoil inside, I kept talking to everyone I could think of and I got pretty much the same answers. In Romania, as PLWHA we were not important enough to matter in the big economic equation. Our lives were simply dismissed. Call me an incurable idealist or even naïve, but I just couldn’t accept this approach. This attitude and my constant effort to contact as many people as possible did pay off in the end. Telling my story and fighting for my rights brought me not one, but two life-saving donations. Now that I had my treatment secured for three months ahead I should have felt relieved. Instead of that, I got even more apprehensive about the future; It no longer looked promising, but gloomy and dark. What use is my own comfort, when so many other people living with HIV in Romania don’t have their treatment secured? For how long can I count on the generosity of strangers to ensure my survival? All these questions made the puzzle of existence harder than ever to solve. However, I am determined to keep on trying. Between the flight or fight responses to this life- threatening situation I chose to stand up for myself and for my human rights. One could say I won my first battle, but I know that the real war has only just begun.
ABplus is a Birmingham-based charity for people living with and affected by HIV. Established in 1996 our membership has grown to over 500 members. We offer practical and emotional support both to people living with HIV and their partners, close friends and family.
Our services: • Weekly debt advice surgery in partnership with Birmingham City Council • Assistance with grant applications or benefit forms • Counselling • Monthly gay men’s and women’s peer support groups • Free complementary therapies • Drop in Monday and Friday 10.30am-3.30pm • Hot Meal Service • Food bank for people in need • HIV & STI testing Wednesdays 2.30pm-6pm – no appointment needed • Positive Steps Training programme for people thinking of returning to work Contact 0121 622 6471 or email enquiry@abplus.org.uk 29-30 Lower Essex Street, Birmingham, B5
Are you a 50+ gay man who lost friends and/or partners to AIDS during the 1980s and 1990s? The Lost Generation: The Social Worlds of Older Gay Male Survivors of the AIDS Epidemic Principal Investigator: Dana Rosenfeld, PhD. Senior Lecturer in Sociology, Keele University Aims of the Research: To interview 30 self-identified gay men, currently aged 50 and older, who lost friends and partners to AIDS between 1982-1996, to find out about their lives and how the AIDS epidemic affected them in their early years and afterwards, up to and including the present. The research will seek to understand how the AIDS epidemic of the 1980s and 1990s affected your social networks, and how you rebuilt them in the aftermath of the epidemic. The research will also look at how the AIDS epidemic has affected your personal lives and identities.
For more information about taking part, contact d.rosenfeld@appsoc.keele.ac.uk
i-base Q&A Simon Collins
Question: If I have unprotected sex with other HIV positive people will I get resistance? Hi, I’m an HIV-positive gay male aged 31 and I was diagnosed and infected in 2008. My CD4 count is 670 and viral load is 31,000. My health is good and I’m not on meds. I’ve been scared to sleep with other positive men through fear of catching treatment resistant strains or worse. I am a passive partner and I’m afraid my question relates to unprotected sex. I am aware of the risks - it got me in this situation! If I were to sleep with an HIV positive guy, is it better for me if he is on meds and undetectable or would that put me more at risk of developing resistance? Now I can ‘sero-sort’ I’d like to know what’s likely to be the safest way to prevent my situation getting any worse, be it developing drug resistance, superinfection or other hard to treat infections? I am also immunised against hepatitis B (HBV). Am I truly safe against this if I were to unknowingly come into contact with it?
with other HIV-positive men. This doesn’t sound healthy unless it was your choice. While HIV knocks everyone for a while, it can also make you more isolated and less confident and if this continues can lead to depression and other problems. In the context of anonymous sex where your partner is unknown, then the risks support you using condoms every time. When you can talk to your partner about treatment, resistance, and other infections including hepatitis C (HCV), then sero-sorting can be an amazingly powerful and liberating aspect of life for many people. But you need to talk, and then trust the information. The more you talk, the easier it gets. Many people find it easier to be out about their HIV status online than in bars, so that can be a good place to practice. In general, anyone who has an undetectable viral load for 6 months or so will be less likely to transmit HIV than someone not on treatment. Viral load is probably the most significant risk factor. But you also need to balance the clinical implications if reinfection occurs. Based on current evidence, the main risk from reinfection, is resistance. The more resistance either of you has, the more drugs that could be wiped out if that strain is transmitted. If neither of you has resistance, and have never taken drugs, then even if reinfection occurs, it is unlikely to have any impact on future treatment. Have you had a resistance test? Most HIV positive people will have had a resistance test and will know the general results. Your potential risk to other HIV positive partners is as important as their risk to you.
Thank you for your question. Lots of people are in a similar situation to you so taking time to go into the details is important.
If either of you has resistance, you need to balance the risk again. Multi-class resistance is very serious – it is like catching HIV in 1985. The clinical implications are that none of the resistant drugs will work. Resistance to one class is serious too. If you lose the NNRTI family, you will be taking more pills when you do start treatment.
Sex is an essential part of life for most of us. HIV complicates this, but it should not stop you having a healthy sex life. I interpret your question as if you have stopped having sex, because you talk about sero-sorting and are worried about risks
The risk from STIs (sexually transmitted infections) should be lower if you know your partner. HCV is sexually transmitted among HIV positive gay men, though how this happens is less clear. As a bloodborne virus, rougher sex, where there is a risk of
Answer:
44
being exposed to blood is probably one of the key factors. Group sex and shared toys or lube are also potentially risky. HBV vaccines can protect against HBV for many years. You should also have a vaccine for hepatitis A. The level of immunity you have can and should be checked by your HIV clinic every year. This is cheap and easy and will tell you whether the vaccine is still protective or whether you need a booster. So in summary, the safest way to protect your health is to talk and be honest. Most HIV positive people are very happy to discuss their health and how they are doing, or to support someone else who is new to this. This is where we can all support each other. Whatever you decide as an acceptable risk for you, the most important thing is to feel in control about your health from now on.
The coalition government is to produce a White paper in July on prevention and public health 4:55 PM Jun 10th via Echofon
Lot of uncertainty about where HIV and sexual health fit in the new government’s agenda according to DH spokesman at conference in Leeds
4:47 PM Jun 10th via Echofon
BASELINE would like to thank Debbie Maiden at HGL in Birmingham for all her help getting the magazine distributed across the West Midlands 12:02 PM Jun 9th via web
Well done Gilead and NAT walkers for being in top ten highest fundraisers last Sunday at CRUSAID W.F.L http://www.walkforlife.co.uk 7:28 AM Jun 8th via web
Aids denialist Pete Duesberg, under investigation by Uni of California, after paper to ‘Medical Hypotheses’ forces publisher to peer review 2:10 AM May 3rd via web
TM
Follow Charlie, the BASELINE cat who 45 tweets at www.twitter.com/baselinetweet
happy HIV birthday! Joel Korn On 23rd April 1984, scientists in America announced HTLV-3 as a variant of a known human cancer virus that had the same scientific makeup as the LAV virus first identified in France. This marked the discovery of the virus which later became known as causing AIDS. To avoid confusion it was later renamed human immunodeficiency virus or HIV. Coming from a fairly sheltered conservative background in the Jewish community in north London at the time, this new piece of information escaped my world. When I reached secondary school, sex education consisted of a group of rowdy boys going through puberty, watching an badly recorded 1970s VHS tape showing a flower becoming pollinated. The teacher could not even say the words “sex” or “sexual health” without getting embarrassed.
‘Sex education consisted of a group of rowdy boys going through puberty, watching an badly recorded 1970s VHS tape showing a flower becoming pollinated.’ My brother, who was five years older than me, was given a Department of Health leaflet from my parents entitled: ‘Boys – all you need to know!’ Later in life I was fortunate to have a worldly-wise older sister to educate me and we took it on as our duty to educate our parents. Because my education took place during the Section 28 years, and I went to Jewish schools, sexual orientation was never spoken about. Working in the sexual health sector for the last 46
Joel Korn decade I know that there are some organisations doing great work in HIV prevention and sexual health. But it frustrates me that three decades on the general population, which has been indirectly affected by HIV, still think it will never affect them. It amazes me that people who grew up in the 1980s, who are now parents, still believe it is someone else’s responsibility to provide sex education information to their children – it is all our responsibility. When is our ‘monumental breakthrough’ going to happen in preventing sexually transmitted infections (STIs) across the age spectrum? Even the new radio campaign for hepatitis C does not mention sex. Our communities want to know and need access to more effective and hard-hitting health promotion messages. The Global Network of People Living with HIV reported, ‘an estimated 33.2 million people are living with HIV worldwide, of whom, 5.4 million are young people. 40% of new infections are amongst 15-24 year olds, most of them female. However, in the global response to HIV there is a massive gap in the support and the meaningful and engaged participation of youth living with HIV’. In West London, where I work, in 2009 alone, there were 10 people aged 24 or younger newly diagnosed HIV positive -this is only the tip of the iceberg.
If there is a way to optimise your HIV management, how will you know? Get informed. Talk to your doctor. Speak to your friends.
Š2010 Bristol-Myers Squibb & Gilead Sciences
VIEMEA10NP001 177/UKM/10-02/MM/1175
Date of preparation: April 2010
National AIDS Trust’s (NAT) Spring Awakening 2010 fundraiser took place at the Design Museum on May 13, raising over £50,000 for the charity. BASELINE’s Susan Cole won a prize in the Tombola. If you’d like to be come along to a future NAT event, email Jo Murch at jo.murch@nat.org.uk with the title ‘Event Registration’ in the subject heading, along with your name and postal address in the body of the email. It really was a fantastic night.
Photos Credit: Dean Ashton
Richard Brierley, Auctioneer
Andre Rafael Dos Santos, Mohammed Amr Badreldin Hamdy and Gilson Batista
Aggie MacKenzie, Martin Dibben, Deborah Jack
HIV writer Susan Cole, BASELINE editor Robert Fieldhouse and Kat Sladden, Communications Manager, NAT
Crowd scene
Howard Charmon, Remi Saget and Tim Gutteridge
The NAT Fundraising Events Committee
Silent Auction Pieces from the Broad Gallery 48
Get your own copy delivered to your door £10 for six editions Call 0121 449 4405 or email: editor4baseline@hotmail.co.uk
e-copy is free. Just email us.
positive action for children Robert Fieldhouse commitment to communities affected by HIV and AIDS: £50 million is being invested in the fund over the next ten years.
Dominic Kemps, Director of ViiV Healthcare’s Positive Action programme speaks to BASELINE. If you had £50 million to spend on HIV, what would you spend it on?
Back in 2001, the United Nations General Assembly set a target for 80% of pregnant women and their children to have access to essential HIV prevention, treatment and care by 2010 in the hope of reducing the proportion of infants born infected by 50%.
ViiV Healthcare, the new HIV-focussed pharma company set up by GlaxoSmithKline (GSK) and Pfizer put this question to a number of key stakeholders- from the workers of multi-lateral companies to community groups of people living with HIV.
“UNAIDS is leading efforts around the reduction of mother to child transmission (MTCT) and together with the Global Fund has called for the ‘virtual elimination’ of MTCT by 2015. The PACF is aligned to these goals, targeting at least eighty percent of the money to be spent in Africa, at a local community level where the need is greatest,” Kemps tells me.
“We ended up with 17 priorities from 40 conversations,” Dominic Kemps, who heads up Positive Action, tells me.
”AIDS is now beginning to reverse decades of steady progress in child survival in Africa.“
For the past 18 years GSK’s Positive Action programme has funded sustainable grass roots projects in more than 50 countries.
So what makes this different to the host of other pharma-led initiatives to support people living with HIV?
But a year ago GSK’s CEO Andrew Witty announced a new and additional initiative, the Positive Action for Children Fund (PACF) “targeting NGOs (nongovernmental organisations) and others working at a grassroots level to prevent mother-to-child HIV transmission (PMTCT).”
“This is something divorced from commercial interest, but sits alongside what ViiV is doing to improve access to medicines in low- and middleincome countries.
Responsibility for the development and implementation of the fund was transferred to ViiV Healthcare following the company’s launch last November and is now a key component of its 50
“Remember these are women who are already accessing care to some extent, so by implication they are accessible.” 77 per cent of women (70 million) in low- and middle-income countries access at least one
antenatal care appointment. This provides the opportunity for all these women to have access to PMTCT and sexual and reproductive services. But, this remains a missed opportunity for most women. Every day, 1.4 million women give birth in low- and middle-income countries. In 2008, 430,000 infants were born HIV positive.
. . .
Without treatment, about half of these positive children will die before their second birthday. Without intervention, the risk of MTCT ranges from 20% to 45%. With specific interventions in non-breastfeeding populations, the risk of MTCT can be reduced to less than 2%, and to 5% or less in breastfeeding populations.
Effective prevention of mother-to-child transmission requires a four pronged strategy. 1. Preventing HIV transmission among prospective parents - making HIV testing and other prevention interventions available in services related to sexual health such as antenatal care. 2. Avoiding unwanted pregnancies among HIV positive women - providing appropriate counselling and support to women living with HIV to enable them to make informed decisions about their reproductive lives. 3. Preventing the transmission of HIV from positive mothers to their children during pregnancy, labour, delivery and breastfeeding. 4. For those women detected and for their families; integration of HIV care, treatment and support.
There are a number of existing large-scale international initiatives to prevent mother-tochild transmission of HIV. These include: The President’s Emergency Plan for AIDS Relief (PEPFAR) - (It is estimated that PEPFAR programmes averted almost 240,000 infant infections between 2003 and 2008)
. . .
. .
The Call to Action Project (set up in 1999, by 2008 had reached 5.2 million women with access to PMTCT services) The UN Interagency Task Team on MTCT (In 2008, 45% of the estimated HIV positive pregnant women in low- and middle-income countries received at least some antiretroviral (ARV) drugs to prevent HIV transmission to their child, up from 35% in 2007 and 10% in 2004.) MTCT-Plus (implemented through 14 clinical programmes based in nine countries throughout sub-Saharan Africa and Asia. Treatment and care provided to 13,000 adults and children between 2002 and 2007) The Global Fund (790,000 HIV positive pregnant women received PMTCT treatment up to November 2009)
“If we focus our efforts, we can make a difference,” Kemps stresses. The first round of Positive Action projects were being announced as we went to press. We hope to report on some innovative programmes in an upcoming issue. www.viivhealthcare.com Read the WHO’s PMTCT Strategic Vision 2010-2015 at: www.who.int/en 51
Tim Baros
I feel like I am carrying around a stigma. Not a physical one like a spot on my face or a really bad haircut, but a stigma. My stigma is spelt “HIV.”
‘Lots of positive people are ashamed and fearful about their HIV. ‘ So what is stigma? Stigma is defined as the phenomenon whereby an individual with an attribute, which is deeply discredited by his/her society, is rejected as a result of the attribute. Lots of positive people are ashamed and fearful about their HIV. I ask myself ‘Do I feel that way?’ I have to say that at times. I do.
through my mind: I had my evening dosage of HIV pills in my bag and they were in an obvious small pill box. Yes, of course, this was the first thing that the bouncer grabbed out of my bag. He made me open the pill box and explain. I told him that they were HIV pills (I came clean then about the pills being HIV medication as I didn’t want him and my new friend to think I had illegal drugs). There was an awkward silence for a good painfully long 30 seconds and the bouncer then mumbled something as I was trying to think quickly of what to say next. Eventually my friend and I both agreed not to go into the bar, but the damage was done.
The last time I came out to someone about me being HIV positive it was in an extremely awkward situation. It was not even during a sexual encounter, unfortunately!
I had been forced to come out as being HIV positive to my new friend and also to a complete stranger! Talk about going public, (even though it was accidental). I felt a little ashamed but luckily my friend and I talked about it some more and actually had a very nice evening anyway.
My new friend and I (we had met a few months prior at a drinks party) were about to walk into a straight bar when the bouncer asked if he could look inside our bags. The first thought flashed
Did I feel rejected and discredited that night? Yes and no. Yes because of the awkwardness of the moment, and no, because my friend accepted me for who I am.
52
You WANT PEoPLE To sEE ThE rEAL You
let’s HIV talk STIGMA The person depicted in this advert is a model.
Talking to people who understand your concerns can really help. Contact one of the groups below (or your local HIV community organisation) for friendly confidential advice. w: nat.org.uk t: 020 7814 6767 w: ahpn.org t: 020 7017 8910
w: tht.org.uk t: 0845 122 1200 w: positivelywomen.org.uk t: 020 7713 0222
Date of preparation: November 2009 AXKAL092992
A Promise for Life
Confidential Support & Advice Confidential Barnsley’s 1st& local support Support Advice group, supporting people Barnsley’s local living1st with HIVsupport in group, supporting people Confidential our Borough living with HIV in Support & Advice our Borough Barnsley’s 1st local support group, supporting people living with HIV in our Borough
me me me positive about change positive about change
Telephone us on:
Telephone us on: 01226 320148 positive about change 01226 320148 Email: info@plusme.org Telephone us on:
www.plusme.org
Email: info@plusme.org
01226 320148 www.plusme.org
me www.plusme.org me here, for you
Email: info@plusme.org here, for you Company No. 06772710
Charity No. 1129248
Company No. 06772710
Charity No. 1129248
Company No. 06772710
Charity No. 1129248
me here, for you
+ve
+ve
+ve
HIV +VE PEER SUPPORT in SOHO www.GMG.org.uk
WHAT WE DO:
.. . . .
Offer diverse, non-judgmental peer advice Provide space to relax and express yourself with other HIV +ve gay men Check-in, followed by discussion on common themes or urgent topics Discuss living with the virus and living as +ve gay men Non-funded, independently run and facilitated by established members
WHY DO WE MEET?
. . . ..
Let off steam about, and help find selfacceptance for being +ve Combat isolation of dealing with HIV by ourselves Talk about medications (starting/taking) and coping with side effects Discuss stigma or experiences of disclosure For friendship and fun, and socialise/network with other HIV +ve gay men
WHERE & WHEN?
.
Every Monday 5.30-8pm in Soho, London (apart from Public Holidays)
WANT TO ATTEND A MEETING? If 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
am I better than you? J. D Bailey It has been clear to me for many years, but seems even more obvious now as I have grown older, that there is a hierarchy among those of us who are HIV positive! Let me explain; I’ve noticed that when charities try and implore supporters to give money towards HIV/AIDS they use people who have contracted HIV from their mothers, not those who have contracted it through sexual acts or bodily fluids. This, I would argue is to heighten supporters’ emotions. Occasionally, they may mention someone who has had a dodgy blood transfusion, but still the message is that the ‘true’ victims of HIV are the ones who had no control over it. Worse still, even when I’ve gone to social groups or camps/conferences for people who are HIV positive, the inevitable question ‘How did you get it?’ would arise. As soon as this question comes up there seems to be a divide between people who contracted it from birth, rape or a dodgy transfusion and those who contracted HIV from sexual acts or by using infected needles.
‘It shouldn’t be about how we got HIV, but more how we can deal with it...’ So my question is: am I better than you? I contracted HIV from my mother. it will never be known whether it was during the pregnancy, birth or whilst breast feeding, but that’s how I got it. Once upon a time I, myself, felt like I deserved more sympathy because I was ‘innocent’. Now I may stand alone on this matter, but I believe that there is a major problem with this train of thought. I was conditioned to feel as though I had a right to receive more sympathy. I’m going to assume that none of us chose to have this immune deficiency, but it’s our lot in life. If we turn against each other, when we should in fact be able to empathise, then how do we expect those who are HIV negative to respond positively towards any of us? It shouldn’t be about how we got HIV, but more how we can deal with it and help others to do so, because at the end of the day it is no one else’s business other than yours and mine.
55
lancashire HIV services Peter Channon Peter Channon looks at HIV in England’s Northwest Lancashire is one of the largest counties in England. It’s stunningly beautiful, but presents numerous challenges in the provision of social care for people living with HIV. For the past three years I’ve led the development of HIV social care services here. Our population is dispersed over a wide and predominantly rural area with small towns and cities such as Lancaster in the North, Blackburn and Burnley in the East, Preston in the Centre, Chorley in the South and Blackpool in the West. HIV prevalence in Lancashire is relatively low, with around 800 diagnosed people. HIV prevalence varies quite significantly from area to area. North Lancashire has over 130 people living with HIV. In total 70% are men who have sex with men (MSM). There are over 170 people diagnosed HIV positive and living in Central Lancashire; they are relatively evenly split between heterosexual and MSM. Two hundred people live with diagnosed HIV in East Lancashire; 60% of them heterosexual.
“The lack of a visible LGBT community can make people even harder to reach.” Blackpool is a separate unitary authority, with a high LGBT population, and has one of the highest HIV rates outside of the major English cities with over 300 people living with HIV. 56
Undiagnosed HIV and late diagnosis are higher in Lancashire than the national average. The lack of a visible LGBT community and infrastructure in most areas and wide variations in the ethnic mix of our communities can sometimes lead to fear of homophobia or racism and make people even harder to reach. The geographical spread of our residents can enforce isolation. Providing specialist services is challenging in itself due to the physical size of the county. Three years ago, Lancashire relied heavily on a single specialist social worker and on the major regional HIV voluntary agencies based some distance away in Manchester. Over the last three years I have worked with partners to develop a local infrastructure. Our specialist HIV social worker returned to generic duties, but rather than simply lament her loss we tried to turn a negative into a positive and reviewed the way in which we organised social services. From local needs assessments we knew that people prefer to use voluntary sector agencies, rather than social workers for the majority of their care needs. The reliance on a single social worker for the whole county meant that there was poor continuity of service if that social worker was off work, due to sickness or annual leave. We devised the role of HIV Champion social workers using the countywide drug and alcohol team of nine social workers. We provided training
and information and a specific care pathway to enable access. This scheme is closely monitored to ensure it meets the needs of our HIV client group and so far seems to be working well. We developed crucial local voluntary HIV services. In North Lancashire, and more recently in neighbouring Cumbria, this is provided by a generic agency called ‘Signposts Multi Agency Resource Centre’ which provides a wide variety of services including case work, information, advice and a local social group. One of the advantages of this service, is that people accessing the service aren’t disclosing their status by doing so; disclosure being a concern among many people living with HIV and particularly so in the small communities of that area. Fylde and Wyre residents are within easy travelling distance of Blackpool. Some services there are provided by SHIVER, a sister project of the CLASS service based in Preston which covers Central Lancashire. They provide information, advice, counselling and a wide variety of health promotion and social support services including case work and social groups. In the East of the County, advice sessions are offered within the HIV clinics in Blackburn and Burnley by specially trained staff from the Citizen’s Advice Bureau. Specialist HIV advice and support is provided by George House Trust. There is also the addition of a new and very popular peer-led group, THRIVINE, which provides regular peer support and social spaces, as well as courses and events including art therapy.
Lancashire still relies on the HIV services based in Manchester, which include: • George House Trust (GHT) • Body Positive North West (BPNW) • Barnardos These are able to support our local agencies to deliver specialist courses. In the past year courses have been developed for delivery on a local level within Lancashire. GHT with support of the Elton John AIDS Foundation deliver the yearly gay men’s newly diagnosed course and gay men’s residential weekend. BPNW has trained local agencies to deliver the Positive Self Management course and is also working with Signposts to deliver community based instant HIV testing. THRIVINE is soon to start delivering its positive picture art therapy course and Robert Fieldhouse from BASELINE has been delivering the HIV and your Body programme here. In the coming months I will be delivering the BEST programme, a training course to raise awareness of the benefits of starting HIV treatment. For more info about Lancashire’s HIV services or comments and suggestions, please contact pchannon@druglinelancs.co.uk or call on: 01772 253 840. Signposts: SHIVER: CLASS: CAB Hyndburn: GHT: THRIVINE: BPNW: Lancashire Social Services:
01524 419 021 01253 311 431 01772 825 684 01254 304 110 0161 274 4499 07890 147 806 0161 882 2200 0845 053 0000 57
running low..? Living Proof
Residential Weekend 2010 9-11 July 24-26 September 17-19 December
National Long-Term Survivors BM LTSG LONDON WC1N 3XX for people living with HIV/AIDS for the past 5 years or more
E: mail@nltsg.org.uk W: www.nltsg.org.uk
Jane Phillips
1. HIV-AIDS Carers & Family Service Provider Scotland 10 Elderpark Workspace 100 Elderpark Street Glasgow G51 3TR Tel: 0141 445 8797 Out of Hours phone support: 07778 117900 2. Summit House Support Ltd Martins Hill Street Dudley DY2 8RT Tel: 01384 243 220 www.summithousesupport.co.uk
6. Body & Soul 99 – 119 Rosebery Avenue London EC1R 4RE Tel: 0207 923 6880 www.bodyandsoulcharity.org
01
3. Body Positive Somerset Creetown House, Albermarle Road, Taunton TA1 1BG Tel: 01373 836121 Email: bpsom1@aol.com
04
4. CLASS, Drugline Lancashire Ltd 2 Union Court, Union Street, Preston PR1 2HD Tel: 01772 253840 Email: class-enquiries@druglinelancs.co.uk www.druglinelancs.co.uk 5. Body Positive Cheshire & North Wales PO Box 321, Crewe, Cheshire CW2 7WZ Tel: 01270 653150 Email: contact@bpcnw.co.uk www.bpcnw.co.uk
7. Yorkshire MESMAC PO Box 549 York YO30 7GX Tel: 01904 620400 Email: northyorkshire@mesmac.co.uk www.mesmac.co.uk
10
05 02 08
03
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: editor@baseline-hiv.co.uk 60
8. Terrence Higgins Trust 43 Pembroke Street Oxford OX1 1BP Tel: 01865 243 389 www.tht.org.uk
07
9. DHIVERSE Office B Dales Brewery 06 Gwydir Street Cambridge CB1 2LJ Tel: 01223 508805 Email: posoptions@dhiverse.org.uk http://www.dhiverse.org.uk/ 09
10.Yorkshire MESMAC PO Box 417 Leeds LS1 5PN Tel: 0113 244 4209 Fax: 0113245 8233 Email: leeds@mesmac.co.uk
Straight and HIV+? You are not alone Peer support, social contact, advice, workshops First and third Wednesdays 6.30pm-8.30pm Email: str8talksg@yahoo.co.uk
61
healthy living news Jane Phillips
“A vacation: Two weeks in the sun - and the rest of the year on the financial rocks”. It’s important to have fun on holiday. You need it, you’ve earned it – but being positive you also need to be a little organised before you take off.
. Make sure you take your meds with you (and a few days extra supply in case of stirring volcanoes etc). Pack them in your hand luggage – if your luggage goes missing you don’t want to be without your drugs.
The Tan
Protect yourself against the sun and use a good sun block. Some meds (like Septrin) are extra sensitive to the sun. Half an hour in the sun without sun screen will increase your vitamin D levels and keep your bones healthy.
Food and Drink
. Always
Food can often be the source of infections. Only drink boiled or bottled. Do not have ice unless you know it’s from boiled water.
. If
Avoid raw shellfish, any raw and ready prepared fruit and vegetables/salads (unless you peeled it yourself ) and food from street vendors.
carry your drugs in their original packaging, and take a copy of your prescription and/or a letter from your doc. you are travelling to a country with entry restrictions on people with HIV you could send them on ahead.
. Do you need to store your meds in a fridge? Check beforehand if there is one where you are staying.
. Never travel without insurance. Use a dedicated HIV insurer. Fill out the European Health Insurance Card (EHIC) at the Post Office. This will also cover you for some medical emergencies within Europe. www.ehic.org 62
Sex
Take your own supply of condoms, femidoms and lube – not all countries have easy access and they might be of inferior quality.
Language
It might be advisable to find out what HIV and AIDS are called in the country you are travelling to in case you there’s an occasion (such as an emergency) where you need to let people know you are HIV positive. www.hivtravel.org
Has Iceland’s volcano really quietened down? No! Kevin Waite
Following Iceland’s Eyjafjallajökull volcano erupting in April, thousands of people’s holidays were delayed.
Eyjafjallajökull volcano will not erupt again. There are still tremors and seismic activity, which could foretell another eruption.
When they claimed on their travel insurance, many were surprised that the claim was declined. They were left with bills to pay for things like accommodation and car hire.
Furthermore, scientists have warned that Iceland’s Katla volcano, which is much larger than Eyjafjallajökull, may be about to erupt. Research by the University College of London, analyzed the last decade of seismic activity around Katla and found there is a strong possibility it will soon erupt. Historically, Katla has followed Eyjafjallajökull’s eruptions within days or months.
Why? Travel insurance isn’t designed to cover any and every situation. Policy wording exists, detailing what is covered and what isn’t. Unfortunately, many people don’t read the wording and assume that all sorts of things will be covered they just aren’t included in the policy. In the case of the volcanic eruption, the relevant section of travel insurance policies is trip delay and abandonment. This is where you can claim an amount of money for each block of, usually, twelve hours that you’re delayed. If the delay is longer than 24 hours, you can abandon your trip (if you haven’t left the UK) and cover is up to the limit of the cancellation section. However, again, as with any insurance, claims are met only under certain circumstances, one of which is if the delay was caused by ‘adverse weather conditions’. Many insurers took the stance that the wind on which the ash was being carried was not adverse – it was just a normal wind. If it had been a gale force wind that had caused delays, claims would have been accepted.
Could it happen again?
Certainly! A geophysicist in Iceland, Magnus Tumi Gudmundsson, says it’s too early to say that the
Is cover available?
There are a small number of travel insurance policies that will provide ash-related cover. The HIV specialist insurer It’s So Easy Travel Insurance was highlighted on Radio 4’s You & Yours programme on 31 May as being one such provider. Although the insurer behind our HIV policy won’t meet ash-related claims, luckily, we work with more than one insurer! It’s possible to buy an additional, very basic and inexpensive policy that will provide trip delay and abandonment related to volcanic ash. Our HIV-inclusive policy will cover any HIV-related claims including obtaining extra medication if someone’s delayed (the other, basic policy won’t cover HIV claims). However, a policy must have been purchased before the announcement of the closure of the airport to which someone was travelling to or from and any ban on airspace in which they were due to fly. So don’t leave it too late! The policy can be bought online, following the link on the www.hivtravelinsurance.com website. www.itssoeasytravelinsurance.com 0844 357 1314 63
Breakthrough in transplantation success
news: hepatitis Jane Phillips
Veggie burgers liver warning
A new investigation in the US highlights the common misconception that veggie burgers are a liver-friendly food. Many people with HCV in the US make veggie burgers a staple part of their “safe” diet. However, a non-profit company investigation found that some veggie burgers are made with a toxin (Hexane) which is known to put an additional burden on the liver. Hexane is a toxic chemical made from crude oil; it is used in the manufacture of some soy-based foods. Soybeans are immersed in a “hexane bath” before they are processed into soy protein - common ingredients in traditional non-organic veggie burgers. The US senior researcher said, “If a non-organic product contains a soy protein isolate, soy protein concentrate, or texturised vegetable protein, you can be pretty sure it was made using soy beans that were made with hexane.” The US Dept. of Agriculture (USDA) organic standards strictly prohibit the use of hexane. But, that rule doesn’t apply to foods labelled “made with organic ingredients.”
liver
Receiving a liver transplant may be the last chance at survival for someone whose HCV has progressed to end-stage liver disease. However, nearly all liver transplant recipients become re-infected a few days after their surgery. Researchers from Hiroshima, Japan have devised a novel strategy to prevent this.They extracted immune cells (lymphocytes) from the donor livers before the transplant. They activated the lymphocytes in test tubes, then injected the activated lymphocytes into the patient three days after they had received their transplant The researchers found this worked by keeping virus levels low in most of the patients. More research is required to investigate injecting activated lymphocytes to suppress HCV. But researchers believe they have made a major breakthrough which may positively impact the future success of liver transplantation.
Experimental drug drops HCV viral load by nearly 100% Early results from a Phase II study suggest that Bristol-Myers Squibb’s experimental drug BMS790052 has unrivalled potency against HCV.
The drug may well be one of the most potent yet at treating HCV. An earlier phase in the research found it was highly effective at blocking the protein NS5A, a new target that might provide a new weapon against a virus that can quickly develop drug resistance. The study is in the US and involves both male and females, treatment naive, chronically mono-infected HCV patients with genotype 1. Although results are looking very promising, it could be another five years or more before we get to see it used in clinics.
64
HCV and diabetes: A deadly Prescribe heroin on the NHS, combo says nurse leader Having hepatitis C greatly increases your risk of developing type 2 diabetes, and diabetes may worsen the prognosis of hep C (HCV).
One potential explanation for this increase in disease progression is that HCV promotes the accumulation of fat inside your liver. A fatty liver is not able to absorb excess glucose from the bloodstream; potentially forcing your blood sugar level to rise. Many people with HCV develop insulin resistance. This means their liver and muscles are not able to absorb glucose (sugar) from the bloodstream and use it for energy. Instead, the glucose is converted into fatty acids and gets stored as body fat, particularly in the abdominal region. Fat also accumulates in the liver and promotes the development of fatty liver disease. HCV increases the risk of liver cancer and people with both HCV and diabetes appear to be are at far higher risk of developing liver cancer.
The NHS should offer heroin to drug addicts and provide open “consumption rooms” for supervised injecting in order to cut crime and keep the public free from dirty needles, said the head of UK’s biggest nursing union. Dr Peter Carter, general secretary of the RCN said giving heroin on the NHS would cut crime rates and help wean addicts off the drug. He said ‘It might take a few years but people will understand’. His statement provoked an immediate reaction from the nursing profession; however, there is research from first studies at King’s College’s national addiction centre to suggest that allowing users to inject heroin under medical supervision could cut local crime rates by two-thirds in six months. Some nurses at the RCN conference agreed:, Claire Topham Brown, said this plan could cut the transmission of viruses such as HIV and hepatitis...”. Other experts said money should be spent on addiction therapies instead. 65
HIV in numbers: women
33 million: the number of people estimated to be living with HIV worldwide
½ are women
“Stigma kills people with HIV.” Angelina Namiba, Positively UK at the NHIVNA conference in Brighton
75% of 15-24 year olds living with HIV in sub-Saharan Africa are women
2876 : the number of women who are estimated to contract HIV
“Tenofovir is now the drug of choice for pregnant women with hepatitis B.” Dr Doug Dieterich, at the HIV-hepatitis coinfection meeting in Tel Aviv
every single day
19,303 : the number of women accessing care in the UK in 2008 who acquired HIV from hetero sex.
138
: the number of women who died with AIDS in the UK in 2008
66
“Shut up and take an HIV test (and keep wearing nice hats).” Silvia Petretti, Positively UK, after hearing of Lady Gaga’s celibacy vow.
You WANT To be AccepTed for Who You Are
let’s HIV talk STIGMA The person depicted in this advert is a model.
Talking to people who understand your concerns can really help. Contact one of the groups below (or your local HIV community organisation) for friendly confidential advice. w: nat.org.uk t: 020 7814 6767 w: ahpn.org t: 020 7017 8910
w: tht.org.uk t: 0845 122 1200 w: positivelywomen.org.uk t: 020 7713 0222
Date of preparation: November 2009 AXKAL093181
A Promise for Life
HIV
UK AND IRELAND
COMMUNITY AWARD 2010
Integrity. Teamwork. Excellence. Do you know someone who’s always ‘Putting Patients First’? At Gilead, we are focused on advancing the care of patients living with life-threatening diseases. But we believe that caring for patients extends beyond the research lab and the doctor's office. In essence, we believe in “Putting Patients 1st”. The aim of the award is to recognise a community group working within the UK in the field of HIV who through their practice has made a significant or unique contribution to people living with HIV. All UK community groups who are providing a supportive environment for people living with HIV are eligible to apply. The award will consist of two grants of £5000 each to fund the core activities of the project or the group nominated and will be in line with the ABPI Code of Practice. To enter please contact us at ukcommunity@gilead.com
Date of preparation: April 2010 001/UKM/10-03/MM/1638a