DR RIC: US ACTIVIST MEDIC EXCLUSIVE
ROME:
TREATMENT IS PREVENTION
RITA: EDUCATING (ABOUT) RECENT INFECTION TESTING
OUR LARGEST EVER PRINT RUN AT 24,500 COPIES Late Summer 2011
ISSUE 9
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You WANT To KEEP QuIET ABouT YouR HIV
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The person depicted in this advert is a model.
Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.
Date of preparation: November 2009 AXKAL092989
A Promise for Life
The clock is ticking; pay now or pay a hell of a lot more later on Hot on the heels of new evidence that shows HIV treatment is prevention, governments meeting at the UN High Level Meeting on AIDS in New York, have committed to get 15 million people on HIV therapy by 2015. By ambitiously expanding treatment by 9 million people over the next four years, according UNAIDS, twelve million infections and more than seven million deaths can be averted by 2020. It could also reduce by more than half the number of new infections by 2015. This global effort will require an additional $6 billion in top up funding each year until 2015. However, funding for AIDS declined in both 2009 and 2010, leaving the Global Fund to Fight AIDS, TB and Malaria, the US-government’s PEPFAR and other programmes short of funds. Cost pressures and the need to make savings have been the motivating forces driving London commissioners to bring in new prescribing protocols based on bulk purchasing a number of HIV drugs for a discounted price and switching patients to these cheaper options. Worryingly, large proportions of the positive community in London remain unaware of the changes. We have reprinted our article about the changes in this edition and are distributing across 160 gay venues in the capital to help raise awareness; there’s an update about the situation on page 14. Thanks go to Gilead, Abbott, Bristol-Myers Squibb and Togorun for helping with our participation in the Rome meeting and with distribution of this issue. Thanks also to ViiV Healthcare for helping us in developing our website. Robert Fieldhouse
Baselinetweet Late Summer 2011
In this issue
04. bylines 06. drop-us-a-line 08. headline: UK 11. herts HIV services changes 12. headline: global 14: london prescribing changes 16: Dr Ric Ferri: A lucky man 20: HIV and the desire to conceive 24: educating (about) RITA 29: sisters of perpetual indulgence 30: life plus 34: international HIV fund 36: myline: Julie Musonda 38: penny wise 42: hotline 45: i-base Q and A 46: myline: Juliet Reid 47: IAS Rome report 48 headline: treatment news 51: BASELINE congratulates 52: life assurance and HIV 57: dear Susan 58: hardest hit march 60: headline: hepatitis 62 headline: healthy living 64: life Ethiopia 68: david Johnson: interview 71: NAT fundraiser 72: joy of pets 74: myline: Barry Edwards 76: lifeline 78: myline: Joel Korn 80: lovespirit conference 82: finelines and numbers
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BASELINE
Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in BASELINE is not to be taken as any indication of health, HIV status or lifestyle.
www.baseline-hiv.co.uk 03
deadlines
for the next issue Copy 13/10/2011 Advertising 27/10/2011 Robert Fieldhouse is thankful to his growing team for all the time and effort they put in to make BASELINE a success. Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicines and has reportedly widely on HIV. Busily attending medical conferences and scouting for the latest stories.
Joel Korn contributes regularly to BASELINE. He is a Support & Development Worker @ River House Trust, Men’s Therapeutic Group Worker @ Mind Greenwich and Therapeutic Counsellor MBACP. Simon Collins is a leading HIV advocate. He heads up HIV i-Base.
Jane Phillips Tweeting, Facebooking and fiddling Mohammad Shakir works part time for about with words. Looking forward to another exciting year growing with BASELINE. Check us out on Twitter @Baselinetweet and our Facebook group BASELINE for regular updates and discussions.
the International HIV Fund promoting their awareness and fundraising campaigns. He works across a range of different charities and NGOs helping promote their different and important causes.
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. See www.baseline-hiv.co.uk for details of the next BASELINE weekend.
David Rowlands having worked across a number of media platforms, David has extensive photography, design and brand development experience and is now focusing in developing his knowledge within the private and voluntary sectors. Yusef Azad has been Director of Policy and Campaigns at NAT (National AIDS Trust) since 2004. He has strong interest in equality and human rights. Before joining NAT he worked for thirteen years at the House of Commons. Susan Cole has worked in communications and marketing for NAM and UKC and is a trained research psychologist.
Chris Morgan is the Marketing Manager for Compass Mortgage and Insurance Services. 04 Late Summer 2011
Suzanne Bannister is the Director of Herts Aid. Suzanne joined Herts Aid in 2001, after moving back to the UK from South Africa. Suzanne has had involvement in work around HIV since 1987. Suzanne is committed to tackling HIV and poor sexual health issues and ensuring that HIV remains on the local and national agenda. Julie Musonda works for Leicestershire AIDS Support Service and is a volunteer member of the LhivE user-led peer support group. Juliet Reid is the Director of CAFPH. Contact the team: Editor: Robert Fieldhouse robert@baseline-hiv.co.uk Associate Editor: Jane Phillips editor@baseline-hiv.co.uk News Editor: Chris O’Connor chris@baseline-hiv.co.uk
Editorial Administrator: Tom Matthews Business Development Manager & Photographer: David Rowlands david@baseline-hiv.co.uk Design & layout: Gareth Williams design@baseline-hiv.co.uk Publisher: Fieldhouse Consulting Ltd
www.baseline-hiv.co.uk
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editor@baseline-hiv.co.uk Hi David I just wanted to drop you a few words to say a huge thank you for the recent BASELINE weekend I went to in North Wales. It was great to meet new people and have some fresh air to blow the cobwebs away. Do you have any other weekends coming up? Jo, Birmingham
Dear Robert I would like to congratulate you on the new look website. It’s great to see BASELINE moving forward. I normally pick up the magazine in clinic but have recently registered as a e subscriber on your website so I can guarantee the next issue in my inbox. Mark, Edinburgh
Reply: Hi Jo. We’ve decided to organise different kinds of events throughout the year, offering our readers the chance to relax for the weekend or do something more energetic. In September we have organised a barge break. Further details of BASELINE events can be found on our website or email me at david@baseline-hiv.co.uk for the most up-todate information. The last weekend was fantastic. Thanks to everyone who participated in such good spirit.
Reply: Thank you for your email. It’s always great to here from our readers. Glad you like the new website; redesigned by our very skillful designer Gareth Williams. You can now register on our website and post comments about the different articles. This is your chance to have a say on topical issues. We love interaction with our readers. Visit www.baseline-hiv.co.uk to register.
Hi all Have just downloaded your posters and will put up in our clinics at Stratford upon Avon and Warwick (GU). Also just to say how much we enjoy the magazine, it’s a great read and very informative. It has also really helped some of our newly diagnosed patients. Keep up the good work Best wishes Jane and all the team Stratford upon Avon and Warwick GU
06 Late Summer 2011
Dear BASELINE, Just wanted to say how much I enjoy your magazine; have been an avid reader since the first issue. I work in a GU/HIV clinic in Dudley and I’m always interrupting my patients reading BASELINE in the waiting area. I encourage them to take a copy home. A lot of my patients have told me they find your articles very useful and interesting. From a professional point of view I find the articles good to keep my knowledge up to date, and I also like it because it has a very positive attitude towards living with HIV/hepatitis. I look forward to my copy each quarter!! Keep up the good work!! Michelle, Russells Hall Hospital, Dudley
www.baseline-hiv.co.uk
UK AND IRELAND
HIV
COMMUNITY AWARD 2011
Integrity, Teamwork, Excellence? This Award aims to recognise a community group who has made a significant or unique contribution to people living with HIV. Given in memory of Martin J Flynn, Community Advocate 1952-2008, two grants of ÂŁ5000 each will be made to fund the core activities of the chosen group.
YOUR NOMINATIONS PLEASE To request a nomination form contact us at: ukcommunity@gilead.com
Date of preparation: April 2011 001/UK/11-03/MM/2872a
news: UK Condom Innovation Rises to the Occasion
An erection-boosting condom has just been recommended for European approval. The condom has been developed by UK company, Futura Medical, and has a small amount of gel in its tip that dilates the arteries and increases blood flow to the penis. The condom has been licensed to Reckitt Benckiser, for sale under its Durex brand. The company’s literature specifies HIV prevention as a benefit of the new condom. The company say the condom has a ‘erectogenic’ compound – Zanifil, which has proved in a double blind study to enhance erections. Zanifil is based on a compound to treat angina. The difficulty in developing the condom, say Futura, was to get the gel into the condom without degrading the latex. The gel is classed as a medical device and not a drug which means it can be sold over-the-counter.
Ray Farnell RIP Ray Farnell passed away at Sandwell General Hospital on 26 July. He was 62 years old. He had been Chair of Body Positive Birmingham for several years in the early ‘90s and had cofounded ABplus with Tom Matthews in 1996. Tracey Jones, of Birmingham City Council’s HIV team told BASELINE; “Ray was a well respected and much valued friend and colleague, known for his energy, vivacity, motivation, inner strength and for the hope he gave to positive people and professionals he met and supported through his work in Birmingham.” 08 Late Summer 2011
The Sussex Beacon Appeal
The Sussex Beacon has recently launched a major fundraising Appeal and needs to raise £150,000 to keep its Inpatient Unit open. “Whilst we are not about to close the Inpatient Unit, we are very concerned about a general decline in fundraising income. This comes alongside real uncertainties within the statutory sector, which makes it difficult for us to predict future funding levels,” says chief executive Kat Williams. The facts, say the Beacon are: It costs £3,000 a day to run the Inpatient Unit at the Sussex Beacon, that’s £1.1 million per year. Its statutory funding to the Inpatient Unit has not increased for the past 3 years, whilst costs have significantly risen together with a year-on-year shortfall of at least £150,000, made up through grants and fundraising. www.sussexbeacon.org.uk
George Michael Special Concert
The newly created Elizabeth Taylor Memorial Fund is to stage a special concert by George Michael at London’s Royal Opera House. The fund was created by the Elton John AIDS Foundation (EJAF). Speaking to the BBC, George Michael said, “I have seen how HIV can affect people’s lives and how it can destroy families and communities. The way that EJAF gets help to people around the world who need it most – often the most marginalised communities – really spurred me on to do something.” The concert will be on November 6.
Chris O’Connor
Positive Finance Re-launched
Compass, the gay financial advisers have recently re-launched Positive Finance magazine as an online blog. Edited by Chris Morgan, the blog has a focus on improving the financial landscape for people living with HIV. Find the new website at www.positivefinance.info and the blog at www.positive-finance.info
Mildmay ‘Unique Service’ Under Threat
The only dedicated HIV rehabilitation unit in Europe, the Mildmay Mission Hospital, in East London, is under threat as financial pressure builds after government cuts. One ward has recently had to close, ‘The situation we face has happened very suddenly and is certainly not down to lack of need; said Fi McLachlan Chief Executive at Mildmay. Uncertainty has caused a downturn in referrals to the centre’s specialist unit dealing with HIV-related neurocognitive impairment (HNCI) or complex physical rehabilitation. “People need to know we are under threat,” says McLachlan, “The services Mildmay offers will not be replaced. Half of Mildmay’s patients are able to return to independent living after treatment, our care is most effective in the long run as early intervention prevents longer-term costs – that’s why we cannot let our unique service be a casualty of the cuts.”
At Home HIV test – RUClear?
RUClear, the NHS service, began offering home ‘sampling’ kits for HIV – free, and on demand in Manchester as of July. The sexual health screening service, RUClear, has a website where people can order the kit online or via a helpline. Home ‘testing’ kits bought online are not yet legal in the UK. The kits contain a dry blood test, which provides users with a small needle to prick their finger and a card on which to return their sample to the service. The service will contact participants with their result two weeks after sending the test off. The HIV kit will also test for syphilis. A separate kit is available for testing Chlamydia and gonorrhoea. The test is being offered to anyone over 16 and living in Manchester. It is understood that if the pilot is cost-effective, the service could be rolled out nationally. The Superdrug pharmacy, in Manchester’s Piccadilly, began offering rapid HIV testing the HIV for £79. The regular range of GUM clinics and testing services in Manchester will do the test for free. Instant testing at home with kits bought off the internet is not yet legal in the UK. Kits can be ordered at www.ruclear.co.uk or by calling 0800 046 1303. All participants are given the option of speaking to a GU nurse specialist before having the test kit sent directly to the address of their choice. www.baseline-hiv.co.uk 09
news: UK The Crescent Hits out at ‘Intimidating Language’
The Crescent, the HIV support group in St Albans Hertfordshire, has accused the NHS of intimidating its service users. The Crescent opted in July not to transfer its services to Herts Aid, a county-wide HIV service which was David Cairns, chair of the All Party granted the contract over The Crescent earlier this year. Critical of the consultation process and unsure of what Parliamentary Group (APPG) on HIV and AIDS died on May 9 2011 aged 44. David provisions would be made available to their 500 service was MP for Greenock and Inverclyde, and users, The Crescent decided to remain open and self-fund. At was the first person born in Greenock to the end of July it received letters from the NHS to distribute represent it in Parliament. The APPG said among their service users. The letter, says The Crescent, informs their service users David approached his role with passion and rigour, and was widely respected by that they are welcome to transfer to Herts Aid and that the colleagues in the HIV sector, commenting, NHS no longer commissions services from The Crescent. It ‘the group has lost a leader, campaigner goes on to explain that if service users choose to continue and friend. Our thoughts are with his receiving services from The Crescent, they would be partner and family at this difficult time.’ discharging themselves from the NHS for that element of David had been ill with acute pancreatitis their care and would not be afforded any NHS liability cover. It is this particular point that has outraged the board at for some weeks. “NAT is profoundly sad at the news of The Crescent who say the implication is that users are “on the death of David Cairns MP. During his their own” when it comes to their medical care. Iain Murtagh, Head of Operations at The Crescent, said: time as Chair David had been a visionary and inspirational leader of the All Party “It is quite plainly an attempt to frighten vulnerable people Group and he will be sorely missed by by suggesting the NHS will not support them. These are the HIV sector in the UK,” said Yusef Azad, people who rely on the NHS for their medication every day Director of Policy at the National AIDS and we want to reassure them that this will remain the case.” Murtagh added,“they’ve not funded us for approximately Trust. Veronica Oakeshott, former Policy 18 months but this issue didn’t seem to bother them earlier,” Adviser to the APPG, said, “David had says Murtagh. A spokesperson for NHS Herts said: “We are sorry if a way of enthusing his parliamentary colleagues on any issue he took to his our letter caused anyone concern – that was certainly not own heart - which was wonderful for us our intention. “It is important that we ensure that service as HIV campaigners. Suddenly we had users fully understand that by choosing to stay with The a new cohort of supporters willing to Crescent they will no longer be receiving NHS services for speak in debates, table questions and that particular element of their care. We have a duty to make meet Ministers. We have lost a great sure that people understand the whole picture so that they can make an informed decision about their care.” campaigner.”
David Cairns: Passion and Respect
10 Late Summer 2011
Suzanne Bannister
Major changes to HIV services in Hertfordshire From 1 July 2011 the HIV voluntary sector services provider Herts Aid has been commissioned by NHS Hertfordshire and Hertfordshire County council (HCC) to extend its services countywide. Herts Aid has been providing HIV and sexual health services to residents of Hertfordshire for the past 20 years. Current services include Information and support; Outreach Services; Education and Prevention; itext; Advice Services; Befriending; Support Groups and Social Activities; Clinical Services (including Rapid HIV testing); Hardship Fund, Children’s Fund and Counselling.
‘Herts Aid’s aim is to make services more accessible by delivering them closer to where people live.’ Herts Aid has also been running an innovative and successful project in Stevenage for the past 2 years called SCREAM (Sex, Contraception, Relationships, Education and Mentoring). The project is active in all the secondary schools across Stevenage and incorporates Theatre in Education, Peer Education and Mentoring, and i-text. The extension to Herts AIDS existing contract, means the organisation is now embarking on a journey to create new services that will: Encourage more user engagement Offer a more flexible service than current provision Provide the county with an effective and efficient service Up to July 2011, only 2 sites, one in Ware (Herts Aid) and one in St Albans, (currently provided by The Crescent) were available for service users to access voluntary sector HIV and sexual health support in Hertfordshire, which is a large county with poor transport links. The Crescent’s contracts
.. .
with Herts County Council and NHS Hertfordshire were terminated earlier this year following a period of review of all voluntary and community services in the county which they fund. It should be noted that the decision not to renew the Crescent’s contract was taken following considerable efforts by HCC and PCT officers to work with the organisation to improve their performance. Their final decision was that there should be a single organisation delivering sexual health and HIV services to people in Hertfordshire because: everyone would receive the same service; one service means one set of management costs, freeing up money to deliver better services to users, their families and carers rather than paying for two sets of managers; one service will give much better value for money, make best use of precious resources, deliver the necessary savings while having little – if any – impact on front line services. Herts Aid’s aim is to make services more accessible by delivering them closer to where people live. Herts Aid has engaged with service users and stakeholders to listen to what they have to say about the best place to locate services to make it easier from them to get to. Services will therefore be available in multiple locations across the county, including Ware, Stevenage, St Albans, Watford and Dacorum, and furthermore, Herts Aid will have a permanent office base in Watford. Please visit the Herts Aid website www.hertsaid.co.uk for maps, addresses and times that services will be available. Just click on the “Our latest news” banner at the top of the page, and you will be directed to these details.
. . .
www.baseline-hiv.co.uk 11
news: global Brazil
- A long-time worldwide model for fighting HIV/AIDS, continues to ramp up its domestic and international disease-fighting efforts. Brazil has long sought approval from the World Trade Organisation (WTO) to take advantage of agreements that allow governments to license the production or acquisition of generic drugs when public health concerns are paramount. Although the WTO sided with Brazil in the early 2000s, the European Union and the US have continued to fight for more stringent intellectual property rights laws, an issue argued during the June UN High Level Meeting on AIDS in June. Brazil has maintained stabilized HIV infection and mortality rates since 2003 and 1998, respectively, Ministry of Health data show. In 2010, 630,000 Brazilians were estimated to be living with HIV. Some 210,000 Brazilians with HIV receive free, government-supplied antiretroviral treatment. Brazil’s public health system has taken many measures to combat HIV/AIDS, including: pledging $2 from every international airline ticket sold to support the UNITAID treatment-access campaign and focusing education campaigns on sexual violence in the country, as well as condom use promotion among women and youth.
India
Positively UK’s Silvia Petretti gave a rousing performance at the UN’s High Level Meeting on AIDS in June. Watch it at: http://tinyurl.com/3g2gxbl
– Homophobic comments by India’s health minister at an HIV conference in Delhi have led to a wave of protest. Ghulam Nabi Azad told the meeting that gay sex was “unnatural” and HIV was a disease that had “come from other countries,” among other remarks. In a landmark judgement in 2009 gay sex was decriminalised in India in 2009 but anti-gay discrimination remains widespread. Anjali Gopalan from the NAZ Foundation, in London, commented she was ‘horrified’ at the minister’s remarks. ‘He was addressing health officials from across the country, and this was a golden opportunity to deal with discrimination.’ A South Asian LGBT organisation has protested outside the Indian consulate in San Francisco, requesting the minister’s resignation and a public apology. More protests are planned. UNAIDS estimate 2.3 million Indians are living with HIV. HIV disproportionately affects high among injecting drug users, female sex workers, and men who have sex with men. 12 Late Summer 2011
Chris O’Connor
Global
– The Medicines Patent Pool (MPP) has concluded its first licensing deal with Gilead Sciences. The agreement is for: tenofovir, FTC, elvitegravir and cobicistat and the soon-to-be licensed ‘quad’ pill combination of those drugs. The agreement will allow for generic versions of the new drug in developing world, shortly after their introduction in richer countries say the MPP The Chief Executive of the MPP, Ellen t’Hoen called on Merck, Abbott and Johnson and Johnson to enter into talks following the opening of negotiations with all other drug companies with HIV medicine patents. The medicines patent pool is working to bring down ARV prices and encourage the development of new formulations such as medicines for children, through the voluntary licensing of intellectual property. The agreements was largely welcomed but Act-up Paris has said that the deal with Gilead excludes some markets in the developing world and will only allow generic manufacturers in India to produce under license, excluding Thai and Brazilian generic producers. Medecins Sans Frontieres commented, that many drug companies have now changed their drug discount schemes: “While there is continued progress to reduce prices for the poorest countries, a significant number of people with HIV/AIDS live in countries that are now excluded from price reductions.” MSF have a new report on drug prices at: www.msf.org.uk The MSF price report also shows good news. Thanks to continued generic competition, the critical drug tenofovir now costs $76 a year, is now cheaper than AZT which costs $88. This means it is becoming more affordable for countries to shift to using World Health Organisation-recommended improved combinations with tenofovir and move away from d4T, which has significant long-term side effects. The price of a one-pill-once-a-day combination that contains tenofovir has come down by 70% since the WHO recommended people move to less-toxic treatment five years ago, from US$613 to $173 per year today. “We’re seeing drug prices continue to decline when patents do not form a barrier to generic production,” said Janice Lee, pharmacist at MSF’s Campaign for Access to Essential Medicines. “These reductions increase the feasibility of reaching the new UN goal of getting 15 million people on treatment by 2015.”
China
- Hu Jia, the Chinese HIV/AIDS activist has won the European Unions leading human rights award, the Sakharov prize. Starting with advocacy for people living with HIV in rural China, Hu Hia founded an organisation helping children with HIV. After spending three and a half years in prison for ‘inciting subversion, he was freed in June 2011.
US
- ‘Fast, safe, application technology is the marketing tag behind new condoms from the US. The condoms are attached with pull-down strips to make them easier to put on. The company says it eliminates the need to ‘flip’ a condom to figure out which way it should be applied. The company say the strips enable the condoms to be applied ‘in the dark or when intoxicated.’
Swaziland
– HIV organisations are saying that the country faces shortages of anti-retroviral drugs. Thousands of demonstrators gathered on the 25th July amid anger at the alleged mismanagement of funds by the country’s monarch, King Mswati. Over 25% of Swazis between 15 and 50 are believed to be HIV positive, say UNICEF and is now the highest national rate. www.baseline-hiv.co.uk 13
Update on London HIV treatment prescribing changes
. . . .
Reports of patients being switched without discussion or consent NHS safety audit covering April-June to be published in September UKCAB to collect reports of bad practice and advocate for patients Clinics to begin long-term safety and efficacy audits The deal struck recently by London NHS commissioners and a number of pharma companies to bulk purchase a number of HIV drugs in return for a cheaper price is beginning to be take effect in clinics across the capital. The deal should see an increase in the number of patients starting therapy with Kivexa (abacavir/3TC) and patients switching to the protease inhibitor, atazanavir. Access to the integrase inhibitor, raltegravir will continue to be severely restricted to patients with the fewest options. HIV organisations across London have begun receiving reports of patients being switched without any explanation or being told; “you have been on these drugs long enough,” rather than have the need to save costs explained to them. UKCAB held a meeting with Lead HIV commissioner Clare Foreman back in April but that meeting left a number of unanswered questions, to which UKCAB requested the commissioner provide a written response. The response took two months and left many UKCAB members feeling “underwhelmed.” Read it at www.baseline-hiv.co.uk More recently Positive East in conjunction with the North East London Sexual Health Clinical Network held an open meeting between its clients and London HIV commissioners. Positive East Director Mark Santos told BASELINE, “The two key concerns were around switching and the impact on people’s trust in their doctor. My concern is that people don’t know about the changes. It is 14 Late Summer 2011
Robert Fieldhouse
vital people know and are able to make informed decisions about their care.” One worried patient at Positive East told Foreman, “I would very much like to help the NHS save money but in the past I have had health issues. My big concern is that if my meds are changed things could go wrong and this would have big implications for me; I would not be able to go to work.” UKCAB is now planning to gather information about where poor practice is taking place in an attempt to assist NHS London and its 23 participating HIV clinics to ensure equitable prescribing practice. Doctors at a number of HIV clinics are now carrying out their own safety audits. Iain Reeves, Lead HIV clinician at the Homerton Hospital told BASELINE, “I hope to organise a sector wide audit. We will aim to get a snapshot look at early problems e.g. switch back, discontinuation and significant side effects and viral loads post-switch. Longer term I think it would be interesting to look at renal [kidney] and lipids [blood fats] along with long-term virological control.” “We are only switching where there is a clinically appropriate rationale. This means that patients on PIs other than atazanavir and darunavir are being asked to consider switching for reasons of simplicity and reduced toxicity. My colleagues and I and are being entirely open about the fact that a switch to atazanavir also results in reduced costs. “There have been no problems so far although some patients note the inconvenience to them in additional clinic visits while switching. When people do not want to switch that choice is always respected.” If you do not wish to switch medication, you should ask your doctor to put ‘I do not consent to the change of my current HIV medication’ in your medical notes.
Offering a wide range of support for anyone living with or affected by HIV within the Leeds area We offer emotional and practical support. Our services include: 1-2-1 support • Group support; including a gay men’s space, women’s group, mum’s and tots group, men’s group and young positive people’s group •Therapies including massage & reflexology We also offer a cognitive behavioural therapy service with our experienced counsellor We offer a volunteer training programme, a positive self-management course and social events through the year. For further information & advice please contact us on: Phone: 0113 244 9767 Email: leedsskyline@thebha.org.uk Or pop in and meet us at 4th floor, Gallery House, The Headrow, Leeds, LS1 5RD
£6, the price of his life. Patrice is 11 years old and lives on the streets in Burundi. Statistics say he could be dead in 2 years. Even if he survives, illiteracy, prejudice and ill health will keep him trapped in poverty. For £6 a month, less than the price of a cinema ticket, you can give an 11-year old boy education, security and hope. You can give Patrice a future. To help visit www.emergepovertyfree.org or text LIVE02 and the amount you want to donate to 70070 from your mobile phone.
Dr Ric Ferri – A Lucky Man Ric has more credentials after his name than a pocket-size magazine can accommodate. He studied at the University of Albany, New York, Fordham Manhattan, Columbia Pacific University, and got his Masters Degree at Boston. He has been the Associate Executive Director of the League of Nursing. Richard S Ferri was born on January 2nd 1956 in Manhattan and lived with his three brothers, one sister, mother and grandma. He was diagnosed HIV positive more than twenty years ago. He lost his first husband 5 years ago to pulmonary fibrosis and found himself hitting the recreational drink and drugs big time – but he got into Recovery with an AA programme. His last known missed HIV meds dose of HIV meds was September 11th 2001 as Ric lay under the Twin Towers with a collapsed lung. He had been on his way to an HIV consultation nearby. The story of AIDS is one of the most important stories of our age. We all have our own to tell. He was there at the beginning, at the epicentre of the AIDS epidemic in New York, USA. This June marked 30 years since the first case report of what turned out to be AIDS was reported and published by doctors in the USA; 1981 was a turning point in our history. Whilst the US politicians and scientists were fighting each other about the new gay related immune deficiency (or GRID); Ric was fighting it head on at St Vincent’s Hospital in Manhattan where he worked as the lead critical care nurse. St Vincent’s quickly turned into a massive AIDS centre with every bed, stretcher and space taken up and made into make-shift areas for dying ‘healthy young men.’ A famous actor turned up for help with a huge KS legion on his face. He was just opening in a Broadway show. His acting career was over. He 16 Late Summer 2011
knew it, Ric knew it and ten days later the actor was dead. Ric was one of just a handful of nurses travelling all over New York in the early 80’s doing HIV homecare and education. New York is a hard city. With the general pace of life being fast, added to the stresses of work, when he seroconverted himself, he failed to realise what was happening. Ric was losing friends left, right and centre, he and his first husband decided it was time to leave and settled in Cape Cod. Ric lives there now with his husband Jim, 3 dogs and 5 cats overlooking a Lake. He works out 5 times a week, eats a really good diet, doesn’t smoke and doesn’t touch alcohol or drugs now. He feels he can say he is lucky. “I have around 350 patients, I see around 20-30 people a day, (and that’s just me). I drive an hour each way to the clinic and I work a ten-hour day. A great deal of my patients are heterosexual, black, sex workers and/or current or ex drug users. A lot of my time is spent analysing whether this person genuinely needs prescribed pain meds or whether they are just using them for themselves, which is challenging for me due to my own personal beliefs about substance abuse and my current high pain problems. I am also seeing and diagnosing young gay men (average age 21 years) everyday who are going to die. One guy this week probably got infected aged around 14/15 years old. He is in the intensive care unit now. He didn’t take his meds, or keep his appointments. He is going to die soon.” Jane: You’re still seeing many people dying with AIDS – why? Ric: “People are dying because they are testing too late – they don’t take meds, and because of anal cancers. I can prescribe the right meds – I have many to juggle with - but I can’t force people
Jane Phillips
www.baseline-hiv.co.uk 17
to take them correctly. I think it’s also because AIDS is not so scary now – the pills work – but you need to take them. You also need to make major life changing decisions like having safe sex all the time, quitting smoking/ drugs, exercising and eating well. I come from a ‘home prevention model of care’ – all I can do is provide the message, the care and the meds, but I can’t swallow them for anyone else. Everyone is responsible for themselves.”
am based in Bedford, Massachusetts which bends over backwards for HIV positive people. But there are other places in the US where money isn’t there for HIV care. Florida is a great example; the waiting list is huge. President Obama now says that you must get health insurance or you pay a huge fine – the fine is much higher than the insurance– it’s a new initiative (aka ObamaCare). But people aren’t necessarily doing it.”
“There are some huge life choices and sacrifices after diagnosis which young people just don’t always want to take on board.”
“Healthcare is a privilege in the USA, not a right.”
Jane: Tell us more about your pain problems Ric: “I had a back injury when I was in my mid’ teens. I have several rods and bits of metal in my spine – so I have always had a certain amount of back trouble. I also have arthritis in my fingers and hands. But, just in the last 2 years or so, on most days, I have been experiencing severe pain in my body; on a scale of 1 to 10 I would say a 7. I believe that it is due to HIV. I have been taking HAART for 20 years now – and that has to be doing some damage. I am adherent to the point of obsession. I present a huge problem for my (very) young Harvard graduate doctor who won’t give me narcotics due to the fact that I am a recovering addict – I can’t even have an epidural type therapy due to the condition of my back. He can’t tell me to make all the normal changes to my lifestyle that we are all told to follow - there are no changes I could make to improve it! I have a great body... but my bone condition is not so great. I need narcotics- so my next appointment presents a big problem.” Jane: How does the medical insurance system impact on HIV? Ric: “In some states we have HIV-assisted funded medical care. You may not get all your meds free but you do get financial assistance. I 18 Late Summer 2011
Jane: How big a threat is hepatitis C presenting right now? “Sexual health is going to become a much bigger problem with increasing hepatitis C (HCV) infections. New HCV treatments are coming; – they are less toxic, more effective and taken for a shorter period of time – which is all good but, when they do become available there’s going to be an avalanche of people demanding care. Another problem that’s impacting the epidemic is that we don’t have enough qualified nurses and doctors to administer HIV and HCV care. We’ve been looking for a year but can’t get anyone suitable. The most HCV genotype in the USA is 1a, and it’s the most difficult to treat and cure. I’m waiting because what’s the point retreating people with an already failed drug? – It’s tough enough anyway, and a trans-jugular liver biopsy isn’t nice. All I can do right now for my coinfected patients is make sure that their HIV is very well managed whilst we wait. For the hep C mono infected patients too I just have to wait for the new oral protease inhibitor for HCV.” Thanks to Dr Ric Ferri for speaking with BASELINE. See www.richardferri.com and follow him on www.blogs.poz.com/richard
running low..? Living Proof .
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Residential Weekends 2011 23 - 25 September 16 - 18 December 2012 23 - 25 March 6 - 8 July 28 - 30 September 14 - 16 December
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www.baseline-hiv.co.uk 55 31 W: www.nltsg.org.uk
HIV and the desire to conceive “What should we now tell patients?” was a question asked from the floor after the presentation in Rome this July of the large HTPN 052 study, which showed that people living with HIV who started treatment immediately substantially protected their HIV negative sexual partners from acquiring HIV. Researchers reported a 96 percent reduction in risk of HIV transmission if HIV treatment was started immediately. Many HIV affected couples that want to become parents are not waiting for an answer. The vast majority of children born to positive parents are conceived naturally, with or without the help of clinicians.
‘What does at least 96% protection against transmission mean to couples wanting to conceive? “It’s as close to zero as you can get - but it’s not zero.”’ Dr Augusto Semprini, the founder of sperm washing in Milan, Italy was curious about what happened to the couples who came for advice and counselling but never went ahead with the process, ‘no shows’ as they are known in the trade. He traced 500 couples – and found half (250) of them had had children by natural means. Many of these couples are missing out on advice on how to minimize even a negligible risk and negotiate often-difficult choices. Reda Sadki, of the French activist group, Comité des Familles, representing families living with HIV, agrees that in their experience pre-conception counselling is the exception and not the rule, ‘usually a woman turns up at the clinic pregnant.’ That question “what do we now tell patients?” was asked by Pietro Vernazza from St Gallen Hospital, Switzerland, also one of the authors of the Swiss Statement, which attempted to answer this 20 Late Summer 2011
when it was published in January 2008. The Swiss Statement laid out parameters for minimising infection: a stable heterosexual couple with no detectable viral load in the positive partner for at least 6 months, no STIs and timed intercourse. It looked for HIV transmission, found none and concluded in the above circumstances an HIV positive individual was ‘sexually non-infectious.’ The radical challenges of the Swiss Statement have not yet been reflected in clinics says Sadki, ‘we feel that HTPN 052 has been used in France to discourage couples from attempting natural conception. The doctors said “wait till we see what that comes up with”. After the Swiss cohort findings, this result is not a surprise to us.’ Once couples are in the consulting room, says Sadki, they can face a lack of reliable information, and can be coloured by a individual clinician’s viewpoint. ‘It is inexcusable for doctors to be reluctant to talk about the risk of HIV transmission in natural unprotected conception. In some cases I think it is criminal - if a couple then lose the opportunity to start a family. Even a couple who are both positive are recommended to use condoms – it feels as if it’s a punishment for being HIV.’ It’s not just the clinics that cannot absorb what the risk levels are. ‘When I ask “what do you think the transmission risk is if you have sex tonight?” says Vernazza, ‘the answer ranges from 50% to 100% – way, way above the reality.’ One comparison - the risk of death from passive smoking is far higher than transmitting HIV within the Swiss guidelines - can be hard to grasp in the real world. Similarly hepatitis C transmission via vaginal sex has occurred in a handful of cases, yet no national guidelines recommend that heterosexual couples living with hepatitis C change the way they protect themselves by using condoms.
Chris O’Connor This is the heart of the matter – balancing risk. HTPN 052 showed that in the group of positive people who took immediate therapy, just one partner of a positive person out of 886 couples sero converted, compared to 27 people who acquired HIV if treatment initiation by the positive partner was delayed. Crucially even that one couple, it transpires, could be excluded, as it seems the positive partner might have been sero-converting when the trial began. The transmitting partner entered the study with a viral load of 87,202 copies and was below 400 copies by day 28. It is possible the transmission to the HIV negative partner occurred in the first few weeks of the study. What does at least 96% protection against transmission mean to couples wanting to conceive? BASELINE asked the trial’s lead investigator Myron Cohen. ‘It’s a huge issue, a negative women and a positive man, it’s not 1 in 100, it’s not 1 in 1000, is it 1 in 100,000 as some models suggest? To use homogenous numbers is a really bad idea. It’s as close to zero as you can get - but it’s not zero.’ In the UK, the 2008 BHIVA (British HIV Association) guidelines state, ‘Current evidence supports a more open discussion of this option [timed unprotected intercourse] with the couple to quantify, as far as reasonably possible, the risk in individual cases to enable them to make an informed decision.’ So what do HIV doctors in the UK think? Dr. Mark Nelson, Chelsea and Westminster Hospital; ‘When I am asked, I say “there is a very small risk to natural conception.” It’s not that helpful, I know this is sitting on the fence. But this is the reality. I cannot know if a patient is being adherent to their meds to remain undetectable.’ With freedom comes responsibility, as they say. When the Swiss Statement came out many couples living with HIV welcomed it as an opportunity to control their own health and lives. ‘We need this discussion about risk and behaviour,’ says Pietro Vernazza, ‘how do we make decisions about our sexual life. If I’m living with a partner and she
The Rome meeting was a game changer; Treatment is prevention
HPTN 052 lead investigator Myron Cohen presents astounding results takes drugs for HIV, I know exactly her adherence. I know exactly her virus. I have been talking with her doctor.’ He adds, ‘It’s a different situation than having sex with a partner who just tells me, “I’m suppressed.”’ The Seminal Question However viral load ‘fully suppressed’ is generally measured in the blood, what about in semen? The Assisted Conception Unit at Chelsea and Westminster say on their website; “…. couples ask about the safety of conceiving naturally. Unfortunately, even in men with negative viral loads, semen can still carry HIV … We therefore strongly recommend that couples wishing to conceive safely continue to have protected intercourse and use sperm washing as a safer www.baseline-hiv.co.uk 21
alternative.” However French virologists are studying the semen samples of positive men from fertility clinics. The 2010 French expert guidelines say, “Latest data indicate that the phenomenon of persistence of HIV in semen in men largely disappeared with current treatments.” The report speculates that newer HIV drugs such as tenofovir and abacavir achieved higher penetration in the genital tract.
“Latest data indicate that the phenomenon of persistence of HIV in semen in men largely disappeared with current treatments.” At the Necker-Cochin hospital in Paris, the team led by virologist Christine Rouzioux assessed the frequency of detection of HIV RNA (HIV’s genetic material) in the semen of men on HAART whose blood viral load was undetectable for at least 6 months from 2002 – 2009. They found that the prevalence of HIV RNA in semen samples was 3.7% (17/455) over the entire period, but the prevalence actually decreased between 2002 and 2005 (from 15% to 1%) and no cases were observed after 2005. Although hindsight is 20:20, it is a sobering thought that the high cost of sperm washing, the lower rates of conception, and the fact that some couples remain childless – may be avoidable in the majority of cases. Fertility Options Opening but Still Limited Even if more couples continue along the natural conception route there is still a need for assisted conception for sero-different couples. A recent study by Pietro Vernazza, presented in Stockholm in July 2011 to fertility experts and about to be published in the journal AIDS, showed that in 53 couples - man positive, woman negative - offered the option of natural conception using 22 Late Summer 2011
pre-exposure prophylaxis and timed intercourse – 70% conceived a child - usually after 6 unprotected cycles, levelling off at 75% of couples pregnant after two years of timed unprotected intercourse. The remaining 25% will need help with conception. When the sero-different couple consists of a positive woman and a negative man other methods of natural conception are available - selfinsemination can be done at home, commonly called the “turkey baster” method. However mother-to-child transmission has to be addressed, although timely treatment with antiretrovirals has an exceedingly high success rate at reducing this. If you decide to take the sperm washing route, there are three main methods of assisted conception: •IUI: A sample of washed sperm is placed inside the womb. Usually done when there are no apparent fertility issues. •IVF: egg is removed from the woman and fertilized by the washed sperm and put back into the womb •ICSI: Sperm washed but egg injected with a single sperm before re-implantation in the womb Liverpool and Manchester United Up until now Chelsea and Westminster Assisted Conception Unit has been the only UK fertility centre to openly offer HIV couples spermwashing. Now the fertility clinic at Liverpool Royal Women’s Hospital has opened up a separate unit, and will be offering sperm washing for couples, positive men - negative. (France in comparison has eight clinics across the country and state funded separate laboratory facilities). Hand-in-hand with this move are commissioning guidelines, the first of their kind in the UK they say, from the Association of Greater Manchester Primary Care Trusts. The guidelines look at clinical eligibility, age barriers and number of cycles, which will be six IUI cycles, a decision
Chris O’Connor based, say Manchester, as an infection control issue.
‘No person or embryo is known to have acquired HIV at a fertility clinic from a HIV sample.’ The Manchester consortium say they are seeing increased demand for reproductive care for HIV positive couples and are minimizing onward transmission of HIV which they point out would save between £0.5 and £1 million for each infection avoided over a lifetime. The guidelines say that same sex couples are not excluded from access to the programme and would be considered on a case-by-case basis, for example a male-male partnership with a surrogate would be considered although the NHS will not be involved in or responsible for surrogacy arrangements. George House Trust in Manchester has welcomed the new arrangements, Lynda Shentall told BASELINE: ‘From a cost point of view it’s a great move as it means that patients don’t have to travel to London for treatment. We now have a better process for making decisions more quickly so that eligible patients get access to treatment more quickly.’ The decision to use a fertility clinic for a sero-different couple in the UK can be a world of whispers and rumours. Many clinics do not say they offer treatment to men or women living with HIV, unless approached directly. How many cycles a couple is eligible for from the NHS is a postcode lottery. In 2001 the BMJ suggested that UK IVF clinics discriminated against HIV positive men and women. 63% of responding clinics said they would refuse treatment. Also in 2001 Ade Apoola then at Whittall Street clinic in Birmingham said IVF clinic discrimination was rife and funding was a lottery. An article in the Daily Mail recently carried the headline ‘IVF Clinics Could Carry Risk of HIV’
quoted Dr Carol Gilling-Smith of the Chelsea and Westminster ACU as saying in a survey she had carried out, only 2 out of 69 clinics had ‘separate’ facilities for treating HIV positive couples. The paper concluded that healthy tissue was at risk from ‘HIV contaminated’ samples. No person or embryo is known to have acquired HIV at a fertility clinic from a HIV sample. ‘I don’t think this is a helpful article,’ says Stuart Lavery of Hammersmith IVF, ‘I don’t think it’s necessary to have separate labs, but you do need separate storage.’ An embryologist at a London IVF clinics, says ‘we are as confident as we can be and follow HFEA (Human Fertilisation and Embryology Authority) guidelines. They employ a double ‘Witness’ system for handling samples, no more than one sample at in a work area at a time, cleaning down after each procedure. All hospitals deal with the risks of HIV to both staff and patients on a daily basis. According to the HFEA, anyone undergoing IVF would be protected from infection just like all the other thousands of patients going through surgery or having treatment every day. For those couples that decide to go the natural route - for the first time in the UK pre-exposure prophylaxis (PrEP) is available for couples wanting to conceive. Dr Yvonne Gileece, reports that Brighton has experienced an increasing demand for requests to conceive naturally. Now Brighton and Birmingham Heartlands are providing 1-2 doses of either tenofovir or Truvada to be taken before and after unprotected sex, at the most fertile time of the month. Again this service is not consistent across the country although in London, St Mary’s offer the service, Chelsea and Westminster don’t. It’s a ‘belt and braces’ approach to lowering transmission risk says Gileece, and there are huge psychological benefits to PrEP for couples that have used condoms for many years, says Vernazza. Across the board people don’t want to let go of the condom. www.baseline-hiv.co.uk 23
Educating (about) RITA: Scientific accuracy and HIV prosecutions
Prosecutions for ‘recklessly transmitting’ HIV to sexual partners have taken place since 2001 in Scotland and since 2003 in England and Wales. NAT along with most other HIV organisations oppose such prosecutions – vast numbers of people are ‘reckless’ in their sexual behaviour, and it is most often the undiagnosed who pass HIV on to others. To single out just a few people with an HIV positive diagnosis (and prosecutions are very rare) for the full force of the criminal law is to scapegoat a handful of individuals for a wider failure of the UK population in safer sex. But while prosecutions continue, there is a lot we can do to minimise their harm and limit their impact. One success has been agreeing guidelines with the police and Crown Prosecution Service on when and how someone can be investigated and prosecuted. The guidelines have ensured that investigations and prosecutions take place with some understanding of HIV and some care over the evidence, which can be used to prove guilt. In the early days of prosecutions there were cases where it had clearly been assumed that the sexual partner who had had an HIV positive diagnosis must have been the one to pass HIV on to the complainant. But how can one know that for sure? HIV transmission is an invisible biological event – no one witnesses it, all that is ever visible (at least to the two – or more - involved!) is sex, whether protected or unprotected. And we know even in unsafe sex the chance of HIV being 24 Late Summer 2011
transmitted is always relatively low. One of the facts we needed to explain to police and prosecutors was that HIV transmission is not an inevitable result of sex between an HIV positive and an HIV negative person - far from it. If the complainant has had other sexual partners then we need also to consider the possibility that one of them may have transmitted HIV to the complainant (even if they were undiagnosed at the time). The prosecution has to prove that it can only have been the accused who passed HIV on to the complainant. To do this, scientific evidence has been used. One piece of evidence is phylogenetic analysis, which compares the viruses of the complainant and the accused to see if they are similar. Early on this evidence had been seriously misused in court cases. It had been claimed that a ‘match’ between the two virus samples meant that the accused was the one responsible for passing on HIV. But it did nothing of the sort. A match could also mean that it was the complainant who passed HIV on to the accused, or that both were infected by someone else, to give just two possible alternative explanations. NAT and NAM commissioned experts to write a paper explaining in detail how evidence had been misused and setting out its proper value as evidence (‘HIV Forensics’ see www.nat.org.uk). This work was included in the Guidance on prosecutions published by the Crown Prosecution Service and the result has been a decline in the number of cases getting to court.
Yusef Azad
If a complainant has had any other sexual partners during the relevant period, it is necessary to trace and test them all and show that no one else could possibly have passed on HIV to the complainant. This is not an easy thing to do. This showed how important it is to ensure scientific evidence is used carefully and accurately in court and that people don’t claim that a certain test result proves someone’s guilt when it doesn’t do so. The unfortunate fact in the case of phylogenetic analysis was that some people had already gone to prison on the basis of scientific evidence, which had not been properly understood and explained to the court. NAT was keen to ensure that this did not happen again – we were on the look out for other scientific tests, which might be relevant to prosecutions and where care is needed in how they are interpreted. Sure enough one came along – RITA testing – and NAT has just published a report warning about how this test had to be understood in the context of prosecutions (‘HIV Forensics II: Estimating the likelihood of recent HIV infection - Implications for criminal prosecutions’ www.nat.org.uk). They haven’t yet been used in court cases – but we weren’t going to wait until someone was wrongly convicted. It is important to be prepared and produce guidance now as to how RITA tests can and cannot be interpreted. What is a RITA test? It is a test to find out whether or not someone has probably been www.baseline-hiv.co.uk 25
infected recently with HIV. These tests have been rolled out in the UK and elsewhere because we need to find out more about the rate at which HIV is spreading in the population. Up until now this was difficult because someone diagnosed with HIV could have been infected any time from a few weeks ago to over a decade ago. There are a number of different types of RITA test but all look in their different ways for signs that the HIV infection is recent. The basic idea is to look at the immune response of the individual to HIV infection - this immune response changes and develops in the early stages of infection before stabilising. So the RITA test looks for indications of an early, as opposed to stabilised, immune response. The test used in the UK identifies whether the infection is likely to have taken place in the previous 5 months, or before. The test does not give any more specific timing than this recent/not recent distinction.
‘NAT has succeeded in securing new advice from the CPS warning prosecutors of the limitations of RITA test results as evidence.’ Whilst a number of countries are now using RITA tests on HIV positive samples, the UK is unusual in being the only place where those diagnosed HIV positive are also being told the result of the RITA test. It isn’t hard to see the possible relevance for criminal prosecutions. Someone given the RITA test result and told their infection is probably recent will find it much easier to jump to a conclusion as to who passed on HIV to them; e.g. If I have only had sex with one person in the last five months and I’m told my infection is recent, I am likely to conclude ‘well then, it must be that person who passed on HIV to me’! 26 Late Summer 2011
But this is not necessarily the case, and NAT’s report explains why. RITA tests are not designed to give individuals reliable information on the timing of their infection – they are designed for epidemiologists to look at the spread of HIV in a population. The cut-off point for an infection being recent is based on the average response rate amongst people with HIV – but for any average there will be individuals who respond below or above the average rate. There are plenty of examples of people having ‘recent infection’ results where it can be demonstrated by other means that they could not possibly have been infected recently. Already NAT has succeeded in securing new advice from the CPS warning prosecutors of the limitations of RITA test results as evidence, and we hope the report will also be used internationally to prevent miscarriages of justice. It is as important that RITA test results given to individuals in the UK are given carefully, emphasising that any indication of recent infection is only approximate and a probability, not definite. Healthcare workers need training in providing these results if they are not to fuel unwarranted accusations, and written patient literature on the test (such as that recently produced by the Health Protection Agency) should be also given to the patient to make clear the limitations of RITA test results. It will take time to change the culture of blame, which still persists around HIV - but we can – at least and as a start – prevent science being abused and misunderstood as a basis for unfounded accusations. NAT hopes our report will contribute to a saner and evidence-based approach to prosecutions - such an approach may one day end prosecutions altogether. www.baseline-hiv.co.uk
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September 1st Quiz Night & Buffet October 6th Meal at a Restaurant in Birmingham November 3rd December 1st Charity Number: 1068191
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Barge Breaks Offering readers the chance to meet new people and explore England’s most beautiful canals For £125, we offer you: • 2 night’s Accommodation • Welcome Drink and a Light Dinner on Friday Evening • Continental Breakfast, Lunch and Evening Meal on Saturday • Breakfast and Pub Lunch on Sunday
For dates and more information contact David at BASELINE on 0121 449 4405 or 07716 963 249 or email david@baseline-hiv.co.uk Please visit www.baseline-hiv.co.uk for future events. BASELINE runs this event on a not-for-profit basis.
Try life at 4 miles per hour
Robert Fieldhouse
Divine Intervention London House of Common Sluts, Sisters of Perpetual Indulgence close HSBC Covent Garden branch in protest against NHS cuts. On Saturday May 28, Queer Resistance, the lesbian, gay, bi, trans, queer and intersex collective, and The London Sisters of Perpetual Indulgence, created a ‘mock’ sexual health clinic outside HSBC in Covent Garden, as part of UK Uncut’s “Emergency Operation” against Health Secretary Andrew Lansley’s proposed plans for the NHS. The HSBC branch and at least forty others were closed as a result of the campaign. Known widely as the in-your-face side of community-based activism, the London House of Common Sluts, the Sisters of Perpetual Indulgence are devoted to “giving back” to their wider community as well as promoting a safer sex message. Through outrageousness and debauchery the Sisters of Perpetual Indulgence preach tolerance, acceptance and peace within communities. Through this direct action, the activist groups raised awareness of the 43% cut in NHS Primary Care Trust funding for HIV prevention services in the capital, which particularly puts gay and bisexual men’s health at risk. Current cuts to the NHS amount to a £20bn ‘efficiency drive.’ British taxpayers continue to subsidise the banking sector by up to £100bn/year; the equivalent of the entire NHS budget. The action included people dressed as doctors and nurses, handing out condoms and lube. The cuts come as figures show a rise of 70 per cent rise in gay and bisexual HIV diagnoses over the past ten years. Organisations affected by the funding cuts include GMFA, Terrence Higgins Trust and PACE, who are part of the Pan London HIV Prevention Programme, which is funded by Primary Care Trusts and commissions a range of organisations to tackle HIV across the capital. www.londonsisters www.twitter.com/SisterDire www.facebook.com type in London Sisters Late Summer 2011
www.baseline-hiv.co.uk
29
Life Plus:
a support package designed especially for you
www.myhiv.org.uk BASELINE speaks with Babs Evans about a new innovative support package for people living with HIV In January this year an innovative resource was launched to transform the way people living with HIV manage their condition long-term. ‘Life Plus’, a new set of online, face-to-face and telephone support services was created by The Elton John AIDS Foundation (EJAF), HIV and sexual health charity Terrence Higgins Trust (THT) and people with HIV in partnership with George House Trust (GHT) and NAM, to deliver cost effective, personalised support for people living with HIV in the UK.
“There is nothing like MyHIV for any other medical condition.” At the heart of the new programme is a dedicated new website, www.myhiv.org.uk, which enables people living with HIV to access interactive services tailored to their individual needs, requirements and stage of diagnosis, wherever they live in the UK. Life Plus also partners NHS clinical care by providing face to face support in areas of the UK with high rates of HIV prevalence; Brighton, Birmingham, Glasgow, Cardiff and Manchester. Clinic-based Health Trainers provide people living with HIV with one-to-one support so they can become experts in managing their condition and 30 Late Summer 2011
the social care challenges that may jeopardise their health and medical treatment. Overall, Life Plus services aim to: 1. revolutionise the way people manage HIV as a long-term condition 2. help clinicians maximise the health of their patients and focus clinical expertise where it is most needed 3. relieve some of the pressure on the NHS through increasing numbers of people living with HIV and increasing associated lifetime care costs 4. reduce the number of people with HIV who drop out of specialist health care services Babs Evans, Grants Manager for the Elton John AIDS Foundation has been integral to the planning and development of Life Plus and began working on the concept in 2004. She recently spoke with BASELINE about the project. “I started work on this project as part of my role as Positive Participation Project Co-ordinator at the National AIDS Trust. People living with HIV (PLWH) told me that they wanted a ‘one-stop shop’ of information and resources. They also wanted a way of talking to each other online, through forums and discussions, that was positive and
helpful. Newly diagnosed people especially said the range of websites, with often conflicting information not relevant to their circumstances, were very confusing. The feedback was that you had to know what you wanted, who provided it and where, in order to find it! “In 2007, my appointment as Grants Manager at the Elton John AIDS Foundation gave me the opportunity to develop the ‘one-stop shop’ idea. Many people had started to think about HIV as a long-term condition rather than a terminal illness. Through voluntary work I met people who were diagnosed and went straight onto treatment, with few experiencing the ill-health that those of us diagnosed a long time ago had. However, what people did need was support to adjust to living with HIV, to meeting other PLWH, resolving issues in their life, getting financial advice and immigration support for example. PLWH didn’t always know where and how to access this, especially outside London where 57% of PLWH live. “Garry Brough, who was working as a patient rep at Mortimer Market Centre in London, and I discussed the online resource and who might have the capacity to develop, manage and sustain something at scale around the UK. THT met our criteria so we entered into discussions with Paul Ward, THT’s Deputy Director. A project
EJAF’s Grant Manager, Babs Evans development team was set up and we helped THT to come up with a monitoring and evaluation framework to measure outcomes. NAM and GHT also got involved as project partners from the start. “There is nothing like MyHIV for any other medical condition. MyHIV starts with who you are and what you need – so the information is tailored to suit our diverse communities. The text changes and even the pictures change, depending on whether you are young, old, gay, an African PLWH etc. Many of the people pictured are PLWH as a big group of us took part in a 3-day photo session. “There are films of PLWH talking about how they dealt with issues, information about support groups and organisations, opportunity to comment on the text and rate services so that other PLWH find out what you recommend and much, much more. “The really innovative stuff on the site is the tools. PLWH that were involved in developing the site wanted to have ways of recording their meds, www.baseline-hiv.co.uk 31
blood results and appointments so all this is up there. I entered all my CD4 and viral load counts for the past 18 years – which shows an interesting graph!
“We want this to be a resource for all of us – whether just diagnosed or an old hand.” “There’s also online counselling, an ‘ask the trainer’ function (which I tested with a question and got a reply back within a day), quizzes and surveys “There are three things I find really useful in using MyHIV: 1. The daily text reminder. I sometimes forget to take my tablets. I have tried setting an alarm on my phone but I tend to just switch off. The text works as I think it’s a friend so I take notice of it! 2. I forget what my tablets are called. I identified them on the site and clicked the boxes. If I was asked I just need to log on and ‘my medication’ appears on my home page – easy. 3. The appointment booking and reminder system, especially as I see other consultants – not just HIV. So I’ve put all my appointments in and set reminders for them too. “On the community forums, I have witnessed the amazing impact that the contributions of more experienced PLWH have had on individuals. For example, a newly diagnosed women had replies from five people within two hours with 32 Late Summer 2011
helpful suggestions and words of encouragement; a man wanting to meet a boyfriend got lots of tips about how to meet people, disclosure and negotiating sex; and a woman who was pregnant who joined the forum has now posted a picture of her beautiful newborn baby – ahhhhh. “I have been so encouraged by the feedback we have had about the site. PLWH say it is exactly what they have been waiting for; that people contributing to the forums have such a positive attitude, focusing on solutions to problems, and that the site creates new opportunities for people to become active in the community over issues that concern them. Each day at least 5 new PLWH register. I would encourage BASELINE readers to join us – we want this to be a resource for all of us – whether just diagnosed or an old hand like me! “HIV professionals, medical and non-medical, have also told us that MyHIV really supports them in their work with patients/clients to help them to better managing HIV in the long-term and get on with their life. This is what we want for every person living with HIV in the UK.”
. . .
1,500 people have registered for the MyHIV.org.uk website resource in under six months of it launching and a third of registrants are using the site’s forums, posting average of 10 posts a day (2,368 posts in six months). 400 people are using the CD4 and Viral Load health tracker to monitor their blood test results. So far there have been around 35,500 visits to the site and over 247,500 page views. www.baseline-hiv.co.uk
me positive about change
Breaking the chains of transmission HIV is still spreading in Leicester, Leicestershire and the UK. Why? It’s simple. Many people have partners that they trust, so they stop using condoms. But, they often don’t know their own or their partner’s status. People can be living with HIV for many years and not realise. It is spread when people have unprotected sex and do not know their HIV status. So although the partners are faithful, they are still at risk of HIV if they both do not know their status. Perhaps a previous partner has been infected and undiagnosed – the chain doesn’t need to be long. Break the chains of transmission by getting tested. If you are negative, you can make sure you stay negative by using condoms. If you are positive, you can stay well by getting the medication and support you need and stay safe by using condoms. If you put yourself at risk make sure you get tested – don’t get caught in the chains of HIV transmission.
Get a Rapid HIV test at LASS. www.lass.org.uk Tel 0116 255 9995 Charity Number 1023914
Telephone us on:
30 Years & On
01226 320148 World AIDS Day 1 December 2011 Email: info@plusme.org
Are you living with or affected by HIV www.plusme.org in the Yorkshire or Humber region or do you provide services to people who are? Take part in a free one-day regional conference organised by +me and here, for you BASELINE Learn from the past; look back over Company No. 06772710 Charity No. 1129248 the past 30 years and look to the future The day will include guest speakers, information stands, resources and activities Share your ideas and discuss issues to include: • HIV treatment advances • mental health • ageing • housing • drugs and alcohol • other blood-borne viruses
me
We are keen that people from all communities living with or affected by HIV take part. Want to be involved? Visit www.plusme.org or email karl@plusme.org or phone 01226 320148
Mohammad Shakir
Education and awareness are essential Studies have shown that raising awareness and improving knowledge of HIV prevention methods can reduce HIV prevalence. A UN report published late last year states that that an AIDS-free generation is possible by 2015 through targeting and focussing on marginalised communities, specifically women and children. This includes reducing vertical transmission (from a woman to her child) through expanding access to medication and education.
‘An AIDS-free generation is possible by 2015.’ It is not impossible to achieve, but we need to act now. Knowledge doesn’t just help reduce prevalence; it also reduces stigma and discrimination and increases understanding of HIV and related issues. Stigma about HIV is a huge problem amongst Muslim communities and countries. Adherence to religious ideals has made it uncomfortable for governments and community leaders to talk openly about HIV, specifically its transmission. This has led to the denial of HIV even affecting their communities and the marginalisation of people who are living with HIV. Imagine if these communities and countries openly educated their citizens about the realities of HIV and how with the right knowledge and tools it can be easily prevented. Focussing on marginalised communities that are unaware of prevention methods, antiretroviral medication during pregnancy and counselling can work towards radically reducing HIV transmission. While drugs and counselling are key to helping people living with HIV lead a normal life,
knowledge and education are equally important in preventing HIV in the first place. International HIV Fund The International HIV Fund was formed to create a network of organisations which can work together through sharing resources, experience and knowledge to access the hard to reach, marginalised communities around the world which are affected by HIV. They are working to evoke a change in social attitudes to HIV in communities and countries around the world; to not just reduce HIV transmissions, but also reduce the stigma surrounding HIV through education and awareness. Their current project “Save My Mother” in Niger is doing just that; delivering weekly workshops to 400 women over the course of a month to increase their understanding of HIV and how it is contracted and for people living with HIV they will learn how to avoid passing it on to others. Women living in the regions of Tillaberi and Naimey are economically disempowered and living in poverty making them susceptible of contracting HIV due to lack of education and awareness. Economic pressures have also led to many women working the sex industry. Working within these communities and empowering them with this knowledge, they hope that HIV prevalence will be reduced and that this can lead to information about HIV and AIDS becoming more freely available to all. For more information about the International HIV Fund please call 020 7368 1645 or visit www.internationalhivfund.org
34 Late Summer 2011
www.baseline-hiv.co.uk
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Julie Musonda
I just want to feel ‘normal’! The debate about the infectiousness of people living with HIV has been raging for a few years now. The first to put their heads above the parapet were the Swiss National AIDS Commission (EKAF) who published The Swiss Statement back in 2008. This highlighted that the risk of HIV infection between sero-discordant, monogamous heterosexuals is negligible if HAART is taken consistently, viral load has been undetectable for at least 6 months, neither partner has any sexually transmitted infections and both partners are counseled and the negative partner is well informed about the risks and provides consent.
‘It’s not that I want to go out roaming the streets and having unprotected sex with the whole of the local rugby club.’ Now the debate has taken been propelled further forward with the publication of the HPTN 052 study. This included1763 HIV sero-discordant (mainly heterosexual) couples across 13 sites in nine countries in Asia, Africa and the USA. The results published in May this year show that antiretroviral treatment taken early in the course of HIV infection reduces the risk of the sexual transmission of HIV to an uninfected partner by 96%. To put this in perspective; this is greater than the protection afforded by condoms. The overwhelming majority of positive people will attest that we do not, under any circumstances, want to pass the virus on to anyone else and will do whatever is necessary to prevent the onward transmission of HIV, while at the same time protecting ourselves from acquiring other sexually transmitted infections. 36 Late Summer 2011
As a positive person it’s not that I want to go out roaming the streets and having unprotected sex with the whole of the local rugby club, as I certainly do not. But to me, the results of HPTN 052 mean my partner and I have choices; informed choices about the kind of sex we have, choices that we should make as a couple and with the help of the specialist team that take care of me. So why I ask is the information supplied by the health agencies different in every country in the EEA? The knowledge is shared, the HIV conferences are worldwide and topics such as prevention, treatment and transmission are hotly debated. All I am asking for is a uniform opinion of the risk! I don’t ever want to pass on HIV. However, If I were single I would like to know that should I meet someone, who I feel is important enough to me to be involved in my life, potentially become a sexual partner, that I can give them clear information for us to make a shared decision that does not leave me worrying myself stupid about accidentally infecting them! Also, in my view, the ability of HIV discordant couples to conceive naturally is now a distinct reality, not only saving them the heartache and the costs of fertility treatment but also handing them back the pleasure of reproduction! Maybe, just maybe, the general public will begin to see that HIV is a long-term health condition and not a time bomb of infectiousness and leave us alone to lead our lives without fear of retribution, stigma or discrimination! After all, I just want to feel ‘normal’! www.baseline-hiv.co.uk
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penny wise?
Faced with a “standstill” budget and a need to save £8-10 million over the next two years NHS commissioners in London have entered a deal with a number of pharmaceutical companies to buy specific HIV drugs in larger volumes in order to obtain a cheaper price. The negotiations have been going on for 4-6 months under great secrecy due to the “commercially-sensitive” nature of the process. Only a couple of community representatives were involved in changes that will affect thousands of people living with HIV in the capital. The changes came into effect on April 1st but the chances are you’ve not heard much about them as commissioners have been slow to communicate with community.
“Commissioners have been slow to communicate with community.” Members of UKCAB (a group of over 300 UKwide community HIV treatment advocates) met with Claire Foreman, Lead Commissioner for HIV for the London Specialised Commissioning Group (LSCG) at the London Consortium on April 6th to better understand the process. UKCAB communicated a number of concerns about the process and the guidance that alters the drugs most people start treatment with and requires almost 3,000, people clinically stable on protease inhibitors, to switch therapy. UKCAB also asked the commissioners to provide written answers to its questions. The NHS will not get the discounted price for a range of HIV drugs if targets for the number of 38 Late Summer 2011
patients on them are not met. Drug companies have built into their bids mechanisms to ensure they do not lose their market share, meaning the process could end up costing the NHS money should a company decide to increase its price in response to a diminishing market share. Long-overdue treatment guidelines from the British HIV Association (BHIVA) are due to be published in the autumn. These may well recommend offering HIV treatment at a CD4 cell count of 500, potentially increasing the pool of people eligible for treatment significantly. Many treatment advocates are worried the new BHIVA guidelines will be politicised by cost pressures. HIV medicines have been demonstrated to be extremely cost-effective. The NHS will recoup their price in the long-term as they keep people living with HIV from needing expensive in-patient care and by preventing illness allow people to work and contribute to the system by paying taxes. Community advocates are particularly concerned commissioners would “use contract levers” – a penalty to withhold a clinics’ HIV drug funding in 2012-2013 - if prescribing targets were not met. The news website aidsmap.com has reported Foreman as saying the London Consortium would NOT use this ultimate sanction. The money that London clinics will receive in 2012-2013 will be based on clinics meeting the targets. If savings cannot be made from drugs budgets, clinics will face staffing or other cuts. The policy context The sterile debates about whether the Coalition Government has breached its pledge to protect NHS budgets now seem but a distant
Robert Fieldhouse
memory. A major policy shift occurred between the publication of the Coalition Programme on May 20th last year and the White Paper Equity and Excellence: Liberating the NHS a few months later. Where the Coalition Programme anticipated an evolution of existing institutions, the White Paper announced significant institutional upheaval. Whilst the government makes much of its “real terms increase” in NHS funding; it’s actually just a 0.1 per cent increase above inflation. The effect is being felt on the ground. In recent weeks the newspapers have been full of stories of front-line services being cut. It is hard to imagine 23 specialist HIV treatment centres in London surviving the next five years. The much-discussed NHS change process is not without significant costs; a whopping £1 billion of the £1.4 billion set aside for it will be spent on redundancy pay outs. An £8 million saving on HIV drugs seems paltry by comparison. The Nicholson Challenge The key priority facing the NHS in the coming years is the “challenge” first articulated by its Chief Executive, Sir David Nicholson, in 2009 to achieve an efficiency gain of 4% each year from 2011-2012. The House of Commons Health Select Committee called the Nicholson Challenge “a high risk strategy.” There’s little evidence to suggest a 4% efficiency gain is possible. According to the Office for National Statistics, NHS productivity actually fell by 0.3% every year between 1995 and 2008. To meet the Nicholson Challenge there is a need for the NHS to make £15 to 20 billion “efficiency savings” over the next four years. London: the capital for HIV in the UK London NHS commissioners have considerable clout; 47% of people living with HIV in the UK get treatment there. Negotiating lower prices for HIV meds has been standard practice for years. London buys Atripla, a drug that will no longer
be available for first-line therapy more cheaply than anywhere in the developed world. But Kivexa has always been cheaper and it remains so. HIV drugs consume 19% of the total NHS drugs budget in the capital. London spends £170 million on HIV care; 6070% of that goes on HIV meds. Around 3,000 people start HIV treatment each year. Before the discounted rates we agreed London did not have enough money to pay for HIV meds for 800 of the 3,000 new treatment starters. HIV patient numbers in London are likely to rise by at least 5 per cent this year. The most contentious change is the recommendation of Kivexa (abacavir/3TC) for people starting HIV treatment. “This isn’t about blanket Kivexa prescribing,” according to Foreman; “well over 50 per cent of patients will remain on the alternatives Truvada or Atripla. The kind of proportion we would need to see using Kivexa is a very marginal increase; just 3 per cent.” The Kivexa debate The proportion of people starting HIV therapy with Kivexa has plummeted since an analysis of the D:A:D study suggested a signal of an association between abacavir use (one of the drugs in Kivexa) and heart attacks. The increased risk was concentrated in patients with other cardiovascular risk factors, including older age, smoking, diabetes, and high cholesterol. A recent analysis by the US Food and Drug Administration of a number of clinical trials including abacavir failed to show this association. But clinical trials are often short term and may include people who are the best candidates for a drug. Cohort studies like D:A:D are not without their limitations either. This really is an issue that is best discussed with your doctor. As far as Foreman is concerned the drug “will do the job it needs to” in “some circumstances for certain patients Kivexa will be perfectly safe.” www.baseline-hiv.co.uk 39
The LSCG guidance states that Kivexa is NOT clinically appropriate in the following scenarios: If you are HLA B-5701 positive [meaning you would be more likely to experience a potentially life-threatening reaction to abacavir] If your HIV viral load is greater than 100,000 copies/mL before you start treatment [as this has been associated with treatment failure among people taking abacavir] If your Framingham risk [a calculation of heart attack risk within ten years] is greater than 10% [before adjustment for abacavir risk according to Data Collection on Adverse events of AntiHIV Drugs (DAD)] If you are hepatitis B: HBsAg +ve or HBV DNA +ve If you are hepatitis C positive and expecting to start hepatitis C therapy
. . . . .
Commissioners are insisting that patients stable on current NRTI treatment [Truvada or Atripla] are NOT required / being asked to switch NRTI [to Kivexa] but BASELINE has seen NHS documentation suggesting otherwise; “additional volumes are achievable through switching existing patients in line with the clinical guidelines.” If you feel you are being inappropriately switched, contact the National AIDS Trust.
“It is difficult to support any change in public policy for prescribing without seeing the evidence base that supports this.” Switching protease inhbitors When it comes to protease inhibitors (PIs), people taking lopinavir/ritonavir darunavir, fosamprenavir and saquinavir will be encouraged to switch to atazanavir; though Foreman says only ten per cent of those prescribed alternatives need to switch for the NHS to reach the volume it needs to obtain the discounted price agreed with 40 Late Summer 2011
atazanavir’s manufacturer Bristol-Myers Squibb. Raltegravir Londoners will remain unlikely to have much access to the integrase inhibitor raltegravir, a drug that has demonstrated non-inferiority to efavirenz but with potential lipid advantages. The cost of this drug has come down significantly in recent months yet commissioners still regard its cost as “prohibitive.” Raltegravir is being reserved for those who need it most. It is possible that people currently taking it will be encouraged to switch to atazanavir to help commissioners achieve the atazanavir target. If you are taking raltegravir and do not wish to change, this is a discussion for you and your doctor. Contact NAT if you feel uncomfortable with any proposed change. The rise of home delivery Commissioners in London are seeking to increase the proportion of people with HIV who get their meds home delivered from the current level of 37 per cent to 70 per cent over the next three years. Home delivered drugs are not subject to VAT.
. . .
What UKCAB is concerned about The extremely restricted community consultation The evidence base for the decision is yet to be published No budget or cost analysis detailing how the savings are to be made has been made publicly available No Equalities Impact Assessment was carried out One month after the contract started LSCG is yet to provide any patient information Commissioners could apply inappropriate pressure on clinics to achieve their targets There is no clarity over whether a patient retains a final veto and can refuse a particular treatment
. . . .
Robert Fieldhouse Plenty about us without us The government has made much of the phrase, ‘Nothing about us, without us’ to show they intend to put patients at the heart of decision-making, but there are no mandatory seats for patient representatives on the NHS Commissioning Board which is likely to commission HIV therapy in the future. The London Specialised Commissioning Group has no community representation from African communities or women living with HIV.
“It gets messy when you are mixing performance targets with people’s lives.” There is a potential conflict between the principle of patient choice and the ability of commissioners to set priorities or restrictions on the use of resources- particularly at a time when resource pressures within the NHS are bound to intensify. Simon Collins from HIV i-base is a patient representative to the London Consortium. Throughout the process he repeatedly asked commissioners to publish evidence to back their decisions, “It is difficult to support any change in public policy for prescribing without seeing the evidence base that supports this,” Collins told BASELINE. Safe and sound Commissioners are planning a monthly audit to assess how far clinics are working within the guidance and achieving their target. In addition a quarterly safety audit will ensure the changes aren’t associated with poorer patient outcomes. BHIVA patient rep Silvia Petretti has asked for that audit to be broken down by gender and race and be available for public scrutiny. Francis Kaikumba, Chief Executive Officer of the African Health Policy Network has expressed concern that an Equalities Impact
Assessment has not been carried out by LSCG. In the Commissioner’s view, they did not need to do one as all the drugs in the new guidance are recommended in the BHIVA guidelines. Kaikumba told BASELINE , “It gets messy when you are mixing performance targets with people’s lives.” The future is generics HIV treatment could get significantly cheaper in a couple of years. By 2013 when HIV treatment is commissioned on a national level, the patent protection for efavirenz, 3TC and abacavir – the three drugs that Londoners will now start treatment with - will have expired. Generic manufacturers may be able to supply these drugs to the NHS at a greatly reduced price, though safety and efficacy would need to be demonstrated with any copycat drug. This may also mean it will be difficult for people with HIV to be treated with new, more expensive medicines that become available in the coming years A taste of things to come? As of May 3rd UKCAB was still waiting for a written response from London Commissioners. This isn’t just an issue for London. Doctors north and south of the M25 may soon be facing similar prescribing protocols as commissioners in both regions are meeting to discuss adopting the same approach as London. Not all doctors in London agree with the new guidance. Inevitably some will follow it, others will not. Increasingly doctors will be obliged to make treatment decisions that are influenced as much by cost as they are value of medicines. If you need support around your treatment contact HIV i-base. www.baseline-hiv.co.uk
41
Liverpool Marathon - Sunday 9th October 2011 The old Mersey Marathon was last was staged in the city in 1992 and is now set to return on a brand new and inspirational course. If you would like to be part of the Sahir House team contact 0151 237 3989.
NAM has just published a new book HIV and UK African Communities, that highlights and signposts the range of services available to African people living with HIV in the UK. It includes information and research specific to UK African Communities and insightful personal stories. It’s a vital resource for anyone working with African people living with HIV. To order a copy contact NAM on 0207 840 0050.
National Conference for People living with HIV ‘No decision about me without me’ a one day meeting for UK HIV Activists Bursaries are available to help HIV activists outside of London attend Positively UK’s conference on September 24th. Contact conference@positivelyuk.org 42 Late Summer 2011
Want to become a trustee of the Food Chain? Each year in October The Food Chain has an election to appoint new trustees to its management committee. Do you know someone, either another volunteer, a friend or a colleague who would be interested in standing as a trustee? Would you consider standing yourself? Please email trustees@foodchain.org.uk to find out more. Got time to volunteer at ABplus in Birmingham? ABplus, a user-led organisation, which provides to support to those living with, and significantly affected by HIV, is looking to recruit more volunteers. Volunteers will assist in all areas of the operation at our base at 29/30 Lower Essex Street, Birmingham. They are looking to recruit a wide variety of individuals, to reflect the diversity of our members. Applicants should be prepared for a CRB check to be carried out. Call 0121 622 6471 for more details.
Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk David Rowlands The Medical Foundation for AIDS & Sexual Health (MedFASH) has revised and updated its popular booklet HIV in Primary Care, for 2011. It covers the primary healthcare needs of people with HIV, ART side effects and drug interactions, and HIV testing and diagnosis. The authors are practising GPs with experience of dealing with people with HIV, and HIV specialists with a background in general practice. As HIV and primary care services change and adapt to the new NHS structures, GPs will be dealing with people living with HIV more and more, so if your GP practice hasn’t got a copy, why not recommend it to them? The booklet is available to download free from the MedFASH website www.medfash.org.uk Hard copies cost £10. Contact MedFASH for further details on 020 7383 6345 or enquiries@medfash.bma.org.uk
Edinburgh Festival Fringe-goers and performers alike will this year enjoy an unusual opportunity to test their wit by entering a joke competition organised by Waverley Care, Scotland’s leading HIV charity. #laffoffstigma encourages people to stand alongside those who are living with HIV, by tweeting in an original joke, on any topic and suitable for a wide audience, in 140 characters and using the hash-tag #laff11. This also prompts their avatar to be added to the #laffoffstigma website (www.laffoffstigma.com), showing their solidarity with those who are living with HIV. Jokes can also be submitted via Facebook on the website or on Waverley Care’s Facebook page. The competition runs August 1-29.
Make + More Positive is a new campaign sponsored by Alere, the company which manufactures a large number of rapid screening tests for a range of health conditions including HIV and other STIs. The campaign hopes to connect people around the world who have been affected by HIV/AIDS and demonstrate that with today's advances in healthcare, living positively is a reality. Launched recently at the IAS meeting in Rome, conference attendees were invited to turn the plus sign into an artistic symbol of optimism. To design your own (+) symbol; 1. Log onto morepositive.com. 2. Download a template or create your own symbol of optimism. 3. Upload your design. 4. Share your story and how you came up with your symbol. Connect at Facebook.com/MorePositive or on Twitter @More_Positive See the website morepositive.com www.baseline-hiv.co.uk 43
Rehoming a dog 1 Register from Battersea 2 Match is as easy as... 3 Rehome The rehoming process at Battersea couldn’t be easier. You can simply register on the website, leave a message on our rehoming line and we’ll get back to you or visit us at any one of our three sites. After a simple assessment, our experienced staff will then match you with your perfect companion.
TAKE US HOME Name: Age: Breed:
Rocky 5 years Akita
gy Full of ener Loves the outdoors Rocky is a beautiful example of the Akita breed in need of experienced owners. For further information visit: www.battersea.org.uk 44 Summer 2011 or call 020 7627 9234.
Name: Age: Breed:
Savannah 2–3 years Staffordshire Bull Terrier Cross
Name: Age: Breed:
Cleo 6 years Lurcher Cross
Loves cuddle s! I’m at Old Windsor
Mature and energetic I’m at Bran ds Hatch
Savannah is a sweet girl. She’s house trained, travels well in the car and settles happily when on her own. For further information visit: www.battersea.org.uk or call 01784 432929.
Cleo is a mature, energetic girl who knows how to get what she wants. She will require careful training. For further information visit: www.battersea.org.uk or call 01474 874994.
Name: Age: Breed:
Blue 2 years Staffordshire Bull Terrier Cross
ner Quick lear it! vis e Com Blue is a great lad who gets very excited around people but is quick to learn with patience and consistency. For further information visit: www.battersea.org.uk or call 020 7627 9234.
Answer by: Simon Collins
i-base Q & A Question: I am on darunavir/ritonavir, Kivexa and raltegravir and my clinic want to stop the raltegravir because of the cost. I am nervous because I used lots of treatment in the past. They say it can be my choice but I am nervous. Answer: Thank you for your question. We are hearing similar cases in London and it’s important that you get advice before deciding what to do. It might be that you don’t need raltegravir. In this case you could reduce the number of meds you need to take. Darunavir/ritonavir is pretty good at overcoming drug resistance to other protease inhibitors. Your clinic may be suggesting something that is good. Or it might be that you were originally prescribed raltegravir for very good reasons. In this case, if you stop, there is a risk that your viral load might rebound. To have an idea of this you really need to have results from resistance tests interpreted by an expert. Your clinic may have already done this but this is something you should check. You can also get your own second-opinion. For this you need not just the last resistance test results, but also any previous resistance tests. Your history of treatment and viral load levels when treatment was changed is also essential to interpret these results. This is quite complex and specialised but i-Base can help if this is useful. We can arrange for a second-opinion if this helps. Your clinic should provide you with your treatment history and resistance test results. If you contact us with these we can get a second opinion on whether dropping the raltegravir is an option that is supported by the research. Most people use raltegravir because they have a history of drug resistance. If this is the case for you then your clinic is not under financial pressure for you to change this treatment. Anyone with a history of drug resistance should not be under any pressure to change treatment unless this is something that they actively decide. www.baseline-hiv.co.uk
i-base 0808 600 8013
ask a question by email, online or phone
questions@ i-Base.org.uk www.i-Base.info/qa
0808 600 8013
take control of your treatment
Juliet Reid
When in Rome… Juliet Reid reports from the IAS conference This year the IAS conference was held at the Auditorium Parco della Musica, a musical venue that hosts a variety of concerts from classical to rock and roll. The weather was hot, Rome is beautiful and full of historical artifacts and a rich history as well as fantastic shopping opportunities (not that I did any shopping mind!). The conference opened to classical music by the youth choir of the National Academy of Santa Cecilia and to activists (including yours truly) chanting ‘Berlusconi is Liar. Fund the Fund.’ Activist Filippo von Schloesser, Chair of Nadir ONLUS, the Italian HIV activist network, told a packed auditorium; “The promises of our Prime Minister to contribute to the Global Fund since 2009 are totally failed. Italy owes $290 million.” I was really struck that in a 200 strong youth Orchestra there was not a single face of colour. It somehow made feel very proud to be British because however posh an event you will always see a scattering of people of colour (however tokenistic!). That aside the music was beautiful. Many speakers alluded to the fact that the conference could be a turning point in the fight against HIV/AIDS due to all the new scientific research coming out both on prevention technologies and treatment as prevention as well as the growing research efforts into developing a cure. In his opening speech the President of the International AIDS Society, Dr. Elly Katabira stated, “…We are at a scientific watershed in the global AIDS response. Indeed this conference may well turn out to be the marker of that watershed.” Whether this will be the case in the current global 46 Late Summer 2011
financial downturn remains to be seen. Antiretrovirals can prevent HIV infection – both through expanding access to treatment for people living with HIV and through the provision of pre-exposure prophylaxis for those at high risk of acquiring HIV. Research published back in May showed a 96% reduction in HIV transmission among sero discordant couples when the positive partner was taking treatment.
“Activists chanted, “Berlusconi is Liar. Fund the Fund.”’ But, in Rome, there was a call for combination of approaches to HIV prevention. There was also a call to scale up circumcision, especially in Africa and there have been successful campaigns in Kenya where nearly 300,000 men have been circumcised in a year and in Tanzania where around 10,000 men were circumcised within 5 weeks. Circumcision has been shown in studies to reduce new cases of HIV by up to 76% however this remains a contentious issue in many countries. The issue of access to treatment and costs associated remains a thorny subject considering that 9 million people globally who need treatment are still not getting it. Certainly the energy at this meeting is a good platform to help realise the for the commitments made by Governments across the globe at the UN High Level Meeting on AIDS to get 15 million people on treatment by 2015; a strategy that has the power to change the course of the epidemic significantly.
Chris O’Connor
IAS Rome 2011 ‘A Double Hat-Trick?’
The initial excitement in Rome was the proof that antiretrovirals protect the HIV negative sexual partners of positive people from acquiring HIV if their positive partner is taking fully suppressive HIV therapy. More studies are showing that HIV negative people in high-risk settings who take HIV meds before sex have are afforded a level of protection against acquiring HIV. ‘The idea of the tension between treatment and prevention, we should just forget about it, and put it behind us, because treatment is prevention,’ Said Dr. Anthony Fauci of the US National Institutes of Health. The big news was HTPN 052, a large international trial, 1,763 couples where the positive partner was put on immediate treatment with CD4 counts averaging between 350 and 550 or where starting therapy was delayed until their CD4 count had dipped below 250 cells. There were 27 HIV transmissions in the group that delayed treatment, and one transmission in the group that started HIV meds immediately, (and that one was thought to have sero-converted just at the start of the trial); overall producing a 96% prevention rate. The other big news was from two PrEP studies. The Partners PrEP study had 4,758 sero-different couples with the negative partner given tenofovir, tenofovir/FTC (Truvada) or a placebo every day. After three years, there were 78 infections; 18 among people taking tenofovir, 13 among people taking Truvada and 47 among people taking the placebo. This trial was stopped early because of the obvious benefit of being on treatment. People who were taking Truvada had a 73% lower rate of HIV transmission compared with people taking
the placebo. The CDC Botswana TDF2 trial looked at a smaller number of couples (1,219) who were put on Truvada or placebo. Nine people taking Truvada became HIV positive compared to 24 taking placebo; a 63 percent reduction in those on the active drug. “Treatment dramatically prevents morbidity and mortality, HIV transmission, and tuberculosis. Furthermore, treatment prevents HIV transmission in vertical, sexual, and injection drug use settings; indeed, a very welcome double hat-trick,” said former IAS President Julio Montaner. Life after placebo was how some people summarised HIV research after IAS 2011. There will be consequences of these trials in that they raise ethical questions to have trials for HIV prevention with a placebo arm when an effective bio-medical prevention is available. The large, complex Voice trial, looking at preventing HIV transmission in women is studying Truvada compared to tenofovir or a placebo oral pill, and tenofovir and a placebo gel. It is expected to report in early 2013. The investigators say they are now looking at the design of the study in the wake of the prevention results. Last but not least, a cure for HIV/AIDS featured at IAS 2011, with many promising studies, most of them still in the laboratory. However now that the US National Institute of Health (NIH) has recently budgeted $240 million for direct AIDS cure research, up from $60 million, an ‘AIDS cure’ will stay on the agenda and hopefully stat moving off the lab bench. See: www.ias2011.org www.baseline-hiv.co.uk 47
news: treatment
Raltegravir/lopinavir/ ritonavir combo looks good for bones
NNRTI Lersivirine looks good in early trials
Lersivirine, a still-in-trials NNRTI reduced HIV viral load similarly to efavirenz among people starting HIV therapy. Lersivirine is being developed by ViiV Healthcare. The drug remains active against HIV despite the emergence of certain drug resistant mutations that emerge following treatment failure with one of the first generation NNRTIs (efavirenz or nevirapine). 195 people were included in this study. Two different doses of lersivirine were studied (500mg and 750mg). The background nukes in this study were tenofovir/FTC (Truvada). At 48 weeks, regardless of which dose of lesivirine they were taking 79% of participants had a viral load below 50 copies/mL compared with 89% taking efavirenz. CD4 gains were similar in the three groups at around 190 cells by week 48. People taking lersivirine reported fewer central nervous system effects but were more likely to report mild nausea. Presenting the results, Chelsea and Westminster’s Dr Anton Pozniak referred to lersivirine as “lipid neutral.” Larger follow up trials are planned. 48 Late Summer 2011
Research presented in Rome suggests a combination of raltegravir and the protease inhibitor (PI) lopinavir/ritonavir is as potent as a triple combination therapy including a boosted PI and nukes. However it is associated with lower decreases in total bone density and lower spine bone density compared with a tenofovir/FTC and lopinavir/ritonavir combination over 96 weeks. Whilst low bone mineral density itself does not always have a clinical effect, some are worried that having persistent low bone mineral density could increase the chance of fractures occurring in an ageing population of people living long-term with HIV. A total of 205 people starting therapy were included in the study. Black people, those with an HIV viral greater than 100,000 copies/mL, those with a lower body mass index and lower levels of limb fat were more likely to have lower bone mineral density at the outset of the study. After 96 weeks of therapy, total bone mineral density was pretty much unchanged from among people taking raltegravir. But there was an approximately 2% drop among people taking tenfovir/FTC and lopinavir/ ritonavir. The investigators said “the decreases observed in the lopinavir/ritonavir plus tenofovir/FTC group are similar in magnitude to the bone mineral density losses observed during the first two years of menopause.”
Robert Fieldhouse
Raltegravir as good as efavirenz over 5 years
The integrase inhibitor raltegravir works as well over five years as the current gold standard therapy, efavirenz, when taken alongside tenofovir and 3TC by people starting treatment. Efavirenz is available as Sustiva and in the co-formulation Atripla. Few patients initiate therapy with raltegravir in the UK; historically this has been because of a large price difference between efavirenz and raltgravirwith raltegravir being more expensive. The price of raltegravir was dropped dramatically in London recently, but commissioners have maintained tight restrictions on its prescription, saving it for patients with fewer options. Latest research shows benefits in terms of reduced toxicity for people starting therapy with raltegravir. The study included 198 patients. Virologic failure was twice as high among people taking efavirenz. 55% of those taking raltegravir reported side effects compared with 79% of those taking efavirenz. One in four patients receiving efavirenz reported headaches compared with one in ten people receiving raltegravir. Total cholesterol rises were also greater among people taking efavirenz and the difference was regarded as too great to have occurred by chance.
New NNRTI elvitegravir looks good for treatment-experienced
Gilead’s soon-to-be licensed HIV integrase inhibitor elvitegravir works as well as raltegravir for treatment-experienced people with extensive drug resistance and is as well tolerated, according to new research. Raltegravir is taken twice-daily. Elvitegravir is taken once-daily, but must be taken with a drug booster (either ritonavir or Gilead’s new booster cobicistat). 702 people were included in the study. Study participants were allowed to construct a viable regimen including a fully active protease inhibitor and a third drug such as the NNRTI etravirine or CCR5 antagonist maraviroc. The most commonly used additional drugs were tenofovir and the protease inhibitor darunavir. Overall similar rates of people achieved an undetectable viral load; and CD4 gains were similar too among the two groups. Apart from a slightly higher rate of diarrhoea among people taking elvitegravir (12% vs 7%), the side effect profile was very similar with only 3-4% of people discontinuing either drug. The researchers stated that elvitegravir is non-inferior to raltegravir when taken alongside a ritonavir-boosted protease inhibitor. Elvitegravir is to be co-formulated with Truvada (tenofovir/FTC) and cobicistat in a single tablet and is expected to be licensed later this year.
Atazanavir works as well for women in real-life setting
Results from a long-term retrospective European cohort study including 1,294 treatment experienced people (336 female and 958 male) show no difference in the time to treatment failure for women taking atazanavir compared with men. Treatment failure was defined as having two consecutive viral load results above 50 or a single viral load result above 50 followed by treatment discontinuation. But women were more likely to discontinue treatment compared with men. This is likely to be due to a number of social reasons; often HIV is one of many priorities women have to manage alongside their care-taking and other responsibilities. No differences in side effects was identified between men and women in the study. www.baseline-hiv.co.uk 49
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On Saturday 24 September one of the biggest conferences of people living with HIV in the UK will be held at the Congress Centre in Central London. Co-ordinated by Positively UK, the one-day conference entitled ‘No Decision About Me without Me’ will bring together 150 people living with HIV from across the UK to discuss key issues around HIV today, how changing NHS and wider Governement policies will affect services and what people living with HIV can do. Conference delegates will be people living with HIV, with places prioritised for HIV activists, and those wanting to find out more and become active. Bursaries will be available to support people to attend from outside of London. If you are living with HIV and interested in a place at the conference please contact conference@positivelyuk.org.uk.
congratulates
Zoe Sheppard, who takes up the role of Advanced Nurse Practitioner (HIV) at the Chelsea and Westminster Hospital.
Bertrand Audoin, Executive Director of the International AIDS Society for delivering a game-changing HIV meeting in Rome
Winnie Ssansu Serruma on her excellent article on HIV and ageing in the Independent
Tina Prashar for being appointed as manager at ABplus in Birmingham
Jo Dodge of the Family Clinic at St Mary’s Hospital London, Imperial College Healthcare for being awarded an M.B.E
Rest assured;
More companies are offering HIV life assurance than ever before
Seven years ago in the HIV community press I publically issued a challenge to the life insurance industry to insure people living with HIV. It wasn’t so much as a challenge at the time, rather more of a dare! Medications and life expectancy had improved and it seemed only a matter of time before the insurance companies would yield. Yet, they still resisted and complained there weren’t enough statistical data and evidence to create a product. The reality has taken five years and some fierce negotiation within the Association of British Insurers HIV Working Group for there to be any movement on the issue. We looked at products from all around the world and always there was a feeling of negativity in the room. Insurance companies were looking for reasons NOT to do the product, instead of reasons to do the product. Admittedly the working group didn’t directly create HIV Life Assurance, but it certainly created the environment and the pressure for it to happen. For the gay and HIV communities to have a voice on this important committee meant they had the opportunity to raise their concerns and press the case for the insurance industry to finally do the right thing and offer life assurance for people living with HIV. Amongst the members of this working group there was a gay and HIV ‘friendly’ re-insurer who 52 Late Summer 2011
felt a responsibility to continue looking at the issue and to try and break down the barriers that still existed within the industry.
‘We established that 33% of insurance companies had taken the plunge and decided to offer HIV life assurance.’ The HIV community owe this lady a debt of gratitude. In 2009 the first HIV Life Assurance Product rolled off the shelf, although it had restrictive criteria, it was still pretty much a normal Life Assurance product. It was offered by the mainstream insurer, Prudential. Prudential did take some risk to their reputation launching HIV Life Assurance, especially as the original product was unable to insure more people, than it was able to insure. Many people particularly took exception to their refusal to insure long-term survivors. There were also restrictions on age with applicants needing to be between 25 and 50. Applicants needed to be on HAART therapy for at least six months, with the treatment resulting in an increased CD4 count and viral load nearer undetectable.
Chris Morgan
Applicants also needed to be hepatitis B and C negative. To say the criteria were restrictive was a understatement with brokers turning away more people than were being offered terms. In reality it was a public relations disaster for Prudential. However, the product was in the market place and at least some people with HIV were getting insurance and looking after and protecting their family and loved ones. Even if many applicants were having to complete an assault course to get cover. But, at least it was a positive step! It soon became apparent that the odds were heavily stacked in the insurers favour with this new HIV Life Assurance. With sums assured limited to ÂŁ250,000 and the term limited to a maximum of 10 years. We were finding that in many cases with Prudential the original 10-year term was being cut to five years following underwriting. Obviously this was to protect the insurance company, because they were lacking a history of previous claims. Many applicants who had minor ailments over and above HIV were being rejected out of hand in the early days. For example, where urine samples contained protein, or slight traces of blood, or where there had been inconsistent CD4 counts over the previous year.
These cases that were originally rejected out of hand were accepted after perseverance and a huge amount of unnecessary stress for the applicant. At least the positive side of these problems was that we were able to interact with the insurer and push back the boundaries. For example, we pointed out that there was no difference in risk to the insurer in a 50 year old taking a 10-year policy and a 55 year old taking a 5-year policy. The maximum age was then quickly (and quietly) changed to 55. Another Positive Step! It was only a matter of time before more insurers would come into the market and with our HIV Life Assurance survey published in December 2010 we established that 33% of insurance companies had taken the plunge and decided to offer the new product. The insurers that were offering the product at the time of that survey were Prudential, Zurich, Fortis Life and Scottish Provident. It has to be said that some of the companies were less than organised when it came to actually delivering the product. For example, of six cases that were presented to Scottish Provident as pre sales enquiries, they www.baseline-hiv.co.uk 53
failed to issue any possible terms on exactly six occasions. Not only was this an incredible waste of time, it raised the question of whether they were actually offering HIV life cover?
‘Medications and life expectancy had improved and it seemed only a matter of time before the insurance companies would yield.’ During the survey we were shocked at the attitude of Aegon Scottish Equitable who when asked if they offer HIV Life Assurance, replied ‘Of Course We Don’t!’ Their underwriting department were quickly brought up to pace on the situation with HIV Life Assurance. So, it’s fair to say there is still a developing market for HIV Life Assurance and part two of
Positive Life will appear in the next issue of BASELINE, containing the results of our 2011 HIV Life Assurance survey and an analysis of all the current HIV Life Assurance providers. Although HIV Life Assurance has been a tough journey so far, we remain committed to researching, developing and advising our clients on HIV Life Assurance. We’ve come too far to turn back now! Chris Morgan is the Marketing Manager of Unusual Risks Mortgage & Insurance Services. www. unusualrisks.co.uk, Editor of Positive Finance Magazine www.positivefinance.info and was a consultant to the Association of British Insurers HIV Working Group for over five years. He may be contacted by phone 0845 474 3075 or by Email chris@unusualrisks.co.uk
Unusual Risks Mortgage & Insurance Services The UK’s Leading HIV Life Assurance Specialists
Call us: 0845 474 3075
Web: www.unusualrisks.co.uk e-mail: enquiries@unusualrisks.co.uk AUTHORISED AND REGULATED BY THE FINANCIAL SERVICES AUTHORITY – please note most buy to let mortgage are not regulated by the Financial Services Authority. Think carefully before securing debts against your home. Your home may be repossessed if you do not keep up repayments on your mortgage. Unusual Risks.indd LateAd Summer 2011 54Baseline
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dear susan...
I have been living with HIV for some time but I feel very isolated. Do you have any advice? You are by no means alone in feeling this way; many people living with HIV have felt isolated at some point. The good news is there is a great deal you can do to combat these feelings.
‘As someone with 2 ex husbands, I recognise relationships don’t guarantee not feeling isolated’ You haven’t said if you are open about your status to family and friends? You are the best judge of how they are likely to react if you haven’t yet told them, but many people living with HIV have found it useful to talk to people close to them about how they are feeling. Yes, there are still some ignorant people out there who may react badly, but in my experience the majority of family members and close friends are supportive to loved ones living with HIV. Even if you currently get some level of support from people you know, many people living with HIV have found it beneficial to share their concerns with people outside of their family and social circle. Talking to others also living with the virus can be very useful in tackling feelings of isolation. There are over 85,000 people living with HIV in the UK, you are by no means alone. You haven’t said where you live, but there are numerous organisations for people living with HIV across the country who offer a range of services, including support groups where you can share your feelings with others in similar circumstances. There are also organisations to support particular Late Summer 2011
groups (such as gay men, women and people from African communities) if you would find this more appealing. NAT have a comprehensive guide of services available by region on their website www.nat.org.uk. One of the nurses at the clinic you attend should be able to give you advice about support groups in your area. I recognise that it can be a daunting prospect to go to a support group for the first time, walking into a room full of strangers, but remember, everyone there would have been in the same position as you at some point. If you don’t yet feel comfortable to take this step, there are opportunities to engage with others living with HIV on the internet. THT has recently launched a website www.myhiv.org.uk for people living with HIV where you can talk to others on message boards and forums and be put in touch with other people living with the virus across the UK. You can also engage with others through mediums such as Facebook and Twitter. You haven’t said if you are in a relationship and if not want to be in one? As someone with 2 ex husbands, I recognise relationships don’t guarantee not feeling isolated, but they can help. Please don’t feel that HIV is a barrier to starting a relationship or having a family. Disclosure can sometimes be tricky, but is by no means an insurmountable problem. You could get some hints from all of the new friends you’re going to meet. Sounds like you need to get your mojo back. Go on. Get back out there. www.baseline-hiv.co.uk
57
David Rowlands
hardest hit march On Wednesday 11 May, thousands of disabled people from all over the UK descended on Parliament to protest at cuts to disability benefits and services. Amid chants of “You say cutbacks, we say fight back!� 3000 protesters peacefully and rather triumphantly gave Maria Miller, minister for disabled people, a resounding vote of no confidence. To those who questioned the weight of the numbers in attendance, I’d respond that many disabled people remain too economically or physically disempowered to have taken part, others, perhaps, were simply too frightened of the repercussions. It was good to see HIV charities making their presence felt. This was my first demo and I was glad the march was short to allow the more physically disabled attendees to take full part. I marched for those who could not; it was an emotionally draining experience but one I would not have missed for the world. A collection of photographs I took is available at www.baseline-hiv.co.uk
58
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news: hepatitis
Maraviroc Associated with Improved Liver Stiffness
People living with both HIV and hepatitis C whose HIV treatment includes the CCR5 antagonist maraviroc have been shown to experience improvements in liver stiffness as measured by a non-invasive liver scan called Fibroscan. In total 59 people with HIV and hepatitis C were included in the study. None were taking hepatitis treatment but all were taking HIV treatment consisting of ritonavir-boosted atazanavir and tenofovir/FTC. Researchers split the participants into two groups; one continued taking their HIV treatment, the other added maraviroc to their current therapy. A Fibroscan was taken at the start of the study and again 24 weeks later. A Fibroscan produces a number, which reflects the stiffness of the liver. A reading of 4 is regarded as a healthy liver and a reading of 13 suggests a high amount of stiffness in the liver. These numbers can be interpreted within the METAVIR score, which rates liver fibrosis from 0 (no fibrosis) to 4 (cirrhosis); a Fibroscan reading of 13 would be a METAVIR score of 4 and may suggest cirrhosis. When researchers did identify changes in liver stiffness it was most likely to reflect improvements among people taking maraviroc and an advance in liver stiffness among people not taking maraviroc. 60 Late Summer 2011
Euro Activists Meet to Discuss Access to New Hep C Drugs
Over 50 community activists, researchers, doctors, pharmaceutical company - and regulatory authorities’ representatives met recently in Sitges to discuss expanded access to a number of new direct-acting hepatitis C drugs. Organised by the European Community Advisory Board (ECAB) of the European AIDS Treatment Group (www.eatg.org), the meeting discussed the need for early access to the HCV protease inhibitors boceprevir and telaprevir for people living with both HIV and hepatitis C and those with liver cirrhosis as well as people who have undergone liver transplant or who are on the waiting list. Community members asked investigators and pharmaceutical companies to provide access to difficult-to-treat populations in parallel with Phase 3 clinical trials. They requested that companies provide drugs at no cost during early access and that community stakeholders be included in decision-making at all levels. Advocates urged the pharma industry respresentatives to involve community members in Data and Safety Monitoring Boards to oversee ongoing trials.
Robert Fieldhouse
Hep C Drug Pipeline Looking Strong
A new report from HIV i-base and the Treatment Action Group in the USA released at the IAS meeting in Rome clearly identifies several generations of new direct-acting antivirals (DAAs) in the pipeline, with the promise of a hepatitis C cure from oral drugs a distinct possibility for the future. There are currently 14 HCV protease inhibitors following closely behind boceprevir and telaprevir, 6 NS5a inhibitors, 10 non-nucleoside polymerase inhibitors, 8 nucleoside or nucleotide polymerase inhibitors, 3 host-targeting agents, 4 novel interferons, 3 immunomodulators, a microRNA inhibitor and an extract of milk thistle in development. Clearly, in the coming years we will have to become more familiar with how all of these drugs work and particularly how safe and effective they may be for people also living with HIV. The full 2011 Pipeline Report, which includes detailed analysis of the HIV drugs pipeline can now be accessed on the i-base website www.i-base.info
New Scottish Organisation Launched to Help Prevent Hepatitis
Hepatitis Scotland has recently launched to promote awareness, prevention, and improve treatment access to people living with HIV in Scotland. “The aim is to ensure that people who are at risk from, or living with, viral hepatitis get the help they need,” said David Liddell, director of the Scottish Drugs Forum and manager of Hepatitis Scotland. An estimated 50,000 Scots are living with hepatitis C, and up to 60 percent are unaware they have it. Hepatitis B affects about 9,000 people in Scotland.
Euro Community Activists met recently in Sitges
First Hepatitis C Protease Inhibitor Licensed in Europe
The first protease inhibitor to treat hepatitis C received approval from the European Medicines Agency in June. Merck’s Boceprevir has been approved for use by patients with hepatitis C genotype 1 and compensated liver disease. It needs to be taken alongside the traditional hepatitis C therapy ribavirin and pegylated interferon. It has been approved for use by people who have previously experienced treatment failure on pegylated interferon and ribavirin and for previously untreated people. Boceprevir has been demonstrated to significantly improve the cure rate when added to pegylated interferon and ribavirin. Common side effects of boceprevir include fatigue, nausea, anaemia, and headache. www.baseline-hiv.co.uk 61
David Rowlands
news: healthy living David gets all fruity
Organic Strawberries are Best for your Health, if not for your Wealth They might set you back a bit more but organic strawberries are now said to be both tastier and better for your health. Recent showed organic strawberries contain greater levels of cancer-fighting anti-oxidants compared with strawberries sprayed with pesticide.
High blood pressure? Try Red Grapes Red grapes are a wonder cure against heart attacks, according to latest research. It’s actually the bits that are thrown away during the wine-making process that appear to the best for you-; the skin and seeds contain high levels of fibre and antioxidants. So while a glass of red might be universally recommended for its antioxidant qualities, the grape itself was needed to significantly reduce volunteers lipid profiles; blood pressure fell 5%, while total cholesterol (particularly the bad ‘LDL’ cholesterol fell 14% on average.
Grapefruit: Simply a Great Fruit. Four out of five women who eat a grapefruit each day for a fortnight report improved concentration. Two out of three report improved energy level and three out of five report weight loss. Try a red or pink grapefruit; they are sweeter so no need to add sugar.
Losing your mind? Eat blueberries Blueberries can improve your memory new research suggests. Compounds called flavonoids in blueberries and other fresh fruit interact with nerve cells, increasing communication between the cells and stimulating the regeneration of brain cells. Scientits argue this can improve both short and long-term memory.
Not the Only Fruit, but and Oranges are Great for your Heart People who eat an orange or a lemon each day may be protected against heart disease and stroke. Researchers at a Japanese University spent three years looking at the diets of 11,000 men and women with no history of disease. By the end of the study men who at citrus fruit each day had a 43% lower rate of heart disease and stroke compared with men who ate it now and then. In women the effect was a 49% reduction. 62 Late Summer 2011
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Life Ethiopia Recently I had the once in a lifetime opportunity to be part of a project called Life Ethiopia. Originally set up 6 years ago within a youth project in Staffordshire by youth workers, Maggi and Kat, whose grass routes approach to outreach work has led them to great success and acceptance among people across Ethiopia. How do you prepare yourself for what is to be a physically and mentally draining experience? I had to put aside all of my anxieties and pre conconceptions and put one hundred percent of myself into the project. I spent 5 weeks fundraising as well as sourcing equipment to give away. 2011 mission’s focus was on sponsoring children and families to enable them to become self-sufficient and create a foundation in which they would have a stronger long-term future. Throughout our ten-day stay we visited over 20 different projects. This offered us a wide understanding of people’s journeys and how they had arrived at their current position in life. To say I was touched and moved by the welcome we received is an understatement. 64 Late Summer 2011
Seeing people’s joy and appreciation of us being there was truly warming. Something I did learn was that a simple smile or hug is priceless. Nikat’s Outreach Centre is a foundation for female sex workers and their children. It was set up by five women, three years ago. Based in Ethiopia’s capital, Addis Ababa, the project aims to help women break away from sex work, provide them with a safe environment, provide child care and get them national ID numbers allowing them to access health care, housing as well as retraining. It was great to see there are now an additional 22 former sex workers all working on HIV prevention within the community. We were welcomed at Nikat’s with a coffee ceremony, which was great honour. I found the ladies to be very confident with 3 clear messages to us; Faith, Religion, and Belief. We saw a true connection between these women and a great community spirit. Nikat’s had set up an innovative 24-hour condom shop, located in an area with over 2,500 sex workers. Sex workers who themselves work www.baseline-hiv.co.uk
David Rowlands in the shop are paid in free condoms rather than hard cash. This enables them to continue sex work safely. Save Your Generation Ethiopia is a peer education project also based in Addis Ababa. It was interesting to see that the police and government were involved with this project. Hennok, who was one of the founders of the project three years ago, explained that they encourage youth to lead by example and this requires buy in from key members of the community. Because of the work that Save Your Generation Ethiopia had done the police were openly talking about HIV and the benefits to testing and treatment. They communicated this message to local taxi drivers whose task was to filter this to their passengers. What was interesting to see was that they valued each other’s knowledge. Sisters of Mercy is an orphanage with 350 children. I met new borns to 16 year olds, some thriving, others with only hours to live. I was very lucky to go into one of their classrooms and speak about how we approach HIV in the UK. These children had a great energy and wanted to learn. The Sisters had recently built 23 self-contained flats outside of the Orphanage integrating 16-year olds back into society, again a forward thinking programme for Ethiopia. Within Addis Ababa 2.5 million people have a disability 13% of 10-14 year olds have no parents A further 13% only have 1 parent There are 8,000 orphaned children In 2009, 4,200 children were adopted internationally The Chancho Region was about a 45-minute drive from Addis Ababa. Visiting a local school we handed out equipment and carried out a workshop on disabilities and HIV within UK society. It was a great opportunity to break down 66 Late Summer 2011
stigma and to explore our different ways of thinking. We introduced different training tools that could be used including the use of music to help relax disabled children and workshops to build a basic knowledge on nutrition. I was taken aback by the generosity of people back in England who had donated football shirts and clothes to Life Ethiopia. In total over 100 shirts were donated and the children went wild for these. During our time there we visited different children’s homes. The aim was to sponsor a child for the year. This provides them with food, education, and health care and provides a platform for their parents to better themselves. We bought a mother a cow so she could sell the milk locally, meaning the child could to go to school. We bought wheat for a family who wanted to make a local liquor to sell, meaning they could provide transport for their disabled child. We sat in small muds huts sampling local liquor and spoke on subjects including witchcraft and other local rituals. Throughout my trip l learnt that a small gesture provides people with the hope for a better future. The joy on the faces of the people we met, I will never forget. Special thanks To The Life Ethiopia Team: Maggi Huckfield, Kat Roberts, Marc Harvey & Tizita Sponsors & Supporters: Kyle Patel & team: ViiV Healthcare, Nikki Fieldhouse: Ted Baker & Debenhams, Kevin: It’s So Easy Travel Insurance, Chris Morgan: Compass Independent, Alison Flintham: Waverley Care, Addictions Training Academy Birmingham, Fieldhouse Consulting Ltd, Tristan Barber, Friends & Family. www.baseline-hiv.co.uk
on fecti nce tis Co-in e r e nf ati A Co Hep by BHIV of HIV / 2011 eded l on a u prec t n n Lond er emb Centre, h An nageme t v r o u Fo e Ma 16 N rence sday h nfe edne for t t Co
0 W e Stree –173 rg 1300 eat Geo r G One
ANNOUNCEMENT BHIVA AUTUMN CONFERENCE including
CHIVA Parallel Sessions 17–18 November 2011 QUEEN ELIZABETH II CONFERENCE CENTRE LONDON Introduction BHIVA is delighted to announce its 2011 Autumn Conference, which will be held at the Queen Elizabeth II Conference Centre, located in the heart of Westminster. Dr Mark Nelson has kindly agreed to serve as the Local Host for this event.
Registration Rates and details can be viewed via the BHIVA website. You can also register online at www.bhiva.org or by using the forms published in the First Announcement.
Key conference topics: ▶ When to start antiretrovirals: TB and cryptococcal infection ▶ Fat accumulation: causes and management ▶ Management of sero-discordant couples ▶ Which viral characteristics matter? ▶ HIV vaccines: lessons learnt and future promises ▶ The impact of the global recession on the HIV epidemic ▶ A synthesis of PrEP studies ▶ The importance of immune activation ▶ The importance of ultra-deep sequencing in clinical practice ▶ Acute hepatitis C ▶ Launch of standards for psychological support for adults living with HIV ▶ Disclosure and HIV: an international perspective
BHIVA Conference Organiser: Mediscript Ltd, 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD Tel: 020 8369 5380 · Fax: 020 8446 9194 · Email: bhiva@bhiva.org
www.bhiva.org
David Johnson:
taking the high road... For a time during the 80s Edinburgh was known as the ‘AIDS capital of Europe.’ HIV had spread rapidly through the injecting drug user (IDU) community. Waverley Care was established in Edinburgh in 1989 and opened Milestone House, Scotland’s only HIV/AIDS hospice. Waverley Care now offers services across Scotland.
BASELINE: Do you think we can sometimes we forget those gains and lose a sense of perspective? DJ: I think it doesn’t do any harm to remember how far we have come, but that shouldn’t stop us from fighting for the best treatments and care and the best prevention messages. It will continue to be an on-going fight.
David Johnson is the director at Waverley Care and after 17 years involvement has decided to retire from the charity. BASELINE took the opportunity to talk to David before he moved on.
BASELINE: How did Waverley Care services change when the antiretrovirals kicked in? DJ: The big change was that Milestone was deregulated as a hospice in 2000 and just operates for respite care. Our community-based services were re-framed to consider “How can I live the best possible life with HIV?”
BASELINE: What are the major changes you have seen in the services Waverley Care provide for people living with HIV over the last 17 years? DJ: When I started Waverley Care had Milestone House; the hospice and the resource services that we were running at Solas, our drop-in centre. It was primarily about end of life care. Solas was doing an awful lot of work with families, women and children around preparing people for an early death. When I started, Waverley Care had an arts project running. They bought a stack of 12 flat packed coffins which we offered as a ‘paint and decorate your own coffin’ project – it was very popular actually. More recently, our Arts Project was at the Toronto World AIDS Conference in 2006. Our women’s group had a film chosen to premiere at the opening night. The film was about living with HIV and stigma. Now we are much more likely to be doing things like ‘How to present your CV’ – so it’s been a huge shift. 68 Late Summer 2011
‘Too many people out there think Edinburgh HIV = drugs.’ BASELINE: What have been the highpoints for you over the last 17 years? DJ: One of them has to be those people who, when I started, were using our services, without probably a lot of hope for the future, who now are Senior Health Promotion Specialists or Senior Heads of Policy in other HIV or health sector organisations – people who really have been able to move on and get back in touch with their skills and abilities. I know that there is another side, which is those people who have not been able to achieve that. For some folk that we work with antiretrovirals came on stream a bit too late or they have been diagnosed late and damage has been done to their health. I think that the quality of life that some people with HIV are able to achieve is compromised, and they
Chris O’Connor
need to be cared for and supported. My worry is that the pressure is on from councils and social services around ‘enablement’, and that’s fine for people who are able to do that – but we also work with people who are always going to be restricted in terms of how they are able to move on. At the moment Edinburgh Council is reviewing the respite service, and it looks like there will not be a designated residential respite service for people with HIV - it will all be back in mainstream activity. These services are so minimal I am not convinced how easy it will be to access them – I have real reservations about that. There is a real irony here, because as people living with HIV are able to live longer and healthier lives, they are going to have increasing social care needs, especially as they get older. At that moment they are going to be less and less available, and the threshold for care eligibility is going to get higher and higher. BASELINE: How much is isolation and mental wellbeing an issue? DJ: We run a buddy service in Edinburgh and Glasgow. The biggest issue is around isolation; particularly for people who have been living longterm with HIV. There is a long way to go about breaking this down to see what is behind that – it is complex. When we were setting up our gay men’s group again, it was amazing how many men wanted to join because they felt isolated. The issue for them wasn’t just about protecting themselves and other people; the issue was about “I don’t have a sex life! I haven’t had a sex life for 10 years!!” Another area of isolation is in the African community. Greater Glasgow has the highest numbers of people from sub-Saharan Africa living with HIV in Scotland. It tends to be very fragmented
David Johnson is leaving Waverley Care after 17 years as Director and no real African community infrastructure in Scotland. BASELINE: In providing HIV services for such a broad range of communities, is it a challenge to maintain a united front? DJ: The culture clash that we had here for many years was between the gay men and the IDUs, particularly at Milestone. We constantly had to work at it. It’s still there, but less than it used to be. But in the early days because everything was far more intense, it did lead to conflict. On 10th July we had Gideon Byamugisha, the first African priest to come out about his status, doing some work with us in Glasgow and Edinburgh. I chaired a discussion between Gideon and one of the Edinburgh MPs. Gideon’s response to a question about whether there is an HIV movement or if it is fragmented was there was that he wouldn’t be here now if it wasn’t for his gay brothers fighting for their rights. This was an important message coming from a black African www.baseline-hiv.co.uk
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Chris O’Connor
clergyman. We need to continually try to achieve that spirit.
‘There has been good collaboration between government and the HIV sector since devolution in 1997.’ BASELINE: When people think about HIV in Edinburgh do they still associate it with intravenous drug use? DJ: I think the history of our epidemic within that community is still out there in the public perception. If you look at the infection figures in Scotland we are talking about 400 new diagnoses a year. Of those, around a dozen are from intravenous drug users sharing works. A lot of the public are really surprised about that number– they still think Edinburgh is about drugs – our message is that Edinburgh has done a fantastic job around minimising infections within that community by introducing harm reduction techniques and reducing needle sharing – and that’s a real success story. When I started Edinburgh was known as the AIDS capital of Europe – and I think Edinburgh people should shout about their successes. The legacy is that there is too many people out there thinking Edinburgh HIV = drugs, they need to catch on and think HIV = sexual transmission as well. BASELINE: Has Scotland been more proactive than the rest of the UK in understanding the issues around hepatitis C? DJ: I think that’s right and I would give the Scottish Government its due – we have a HIV Action Plan for Scotland, we have a Hepatitis C Action Plan too, and they may be publishing HIV standards through Health Improvement Scotland; those standards will apply to the voluntary sector as well as the statutory sector - which is a first. There has been great engagement since 70 Late Summer 2011
devolution in 1997. There has been good collaboration between government and the HIV sector and I think things are in that sense further ahead than in England. We have had to look at hep C in its own right as well as in relation to co-infection. Our newer projects have had funding on hep C, HIV or both. BASELINE: Are the prevention messages getting across in Scotland it is an issue in the rest of the UK with MSM HIV infections remaining high? DJ: I don’t think any of us know why we are not cracking this. We are investing a lot of time and effort into MSM prevention plans, but we are not showing great successes; if you measure by new diagnoses. The argument is that you just don’t know how many you are preventing and of course that’s true. I think we need a lot more UK-based research on this. We need to know what really is making a difference. BASELINE: Given the seemingly ever-changing role of HIV services – where do you see Waverley Care after you’ve gone? DJ: We know that accessing services is going to become much more difficult and we need to be aware that many people living with HIV are going to be living on their own with limited family support. Whether the kind of community spirit that helped us at the beginning of the epidemic will help us with social care and older age, I just don’t know. I am very confident that Waverley Care will survive and thrive in the future. We are very flexible and adaptable we have a good track record on delivering services. We have a wide enough diverse funding base to survive. As for me, it has been an incredibly rewarding time at Waverley Care and I will hopefully still be involved with HIV care – I’m not going to go far away.
NAT’s Fundraiser Spring Awakening recently raised £35,000 to continue the vital work of the charity
Deborah Jack, Yusef Azad, Dame Denise Platt
Megan Morrison, Robert Fieldhouse, Nikki Fieldhouse, David Rowlands
BASELINE columnist Susan Cole and Megan Morrison NAT staff and volunteers Katie, Becky and Helen
Jamie
The joy of pets What is it, What do you see? It’s a dog to some, an animal to others and the world to me. Meet Chakotay my two year old boxer dog. He is my no-questions-asked non-discriminating nonjudgmental mate. He’s not a bitch. One of many explanations in the dictionary states a mate is a buddy, a pal, a friend. Yep this guy is all of that to me. Little did I know that day, two years ago, when I was on my balcony of my high rise unit in Sydney how my life would change for the better when I got a dog.
‘All I can say is, “don’t live life not happy; it’s not worth it.”’ Looking out over a great view from a great apartment, after finishing a day at work in a great job many would say I had it all in many respects. But no I was as lonely as you could imagine. Sure I had friends and I had mates and I had family but still I was lonely. I was over it, you know, just the weight of living. My mind harped back to how much fun it was to have a dog as a kid. So I went inside and thought I have to make a change, I had to take control. I had to be the one to change my life to make me happy. I thought I want a mate, a pal, a best friend. But I can’t have a dog in a unit. But I can’t go on living so lonely. What can I do?? You know I said to myself I can move. I can live somewhere else. The life I have now is not making me happy. So change it!! Get a dog. Move. Live life another way; more of a life of, stop worrying about yourself. Have something to look after; something that needs you as much as you need it is something to love and it will love you. As I said, little did I know how my life would change.
I typed boxer pups into Google and this is the pic I found. A little pup, some 1200 kms away. I rang the breeder to ask if he was still available. Yep he was, but so far away. What to do? The breeder said we can courier him to you. Really? So two years ago, what is now the world to me, was flown into Sydney Airport and into my heart. All my supposed problems in life fell into insignificance. It was no longer about me, me, me. All I can say is, “don’t live life not happy; it’s not worth it.” If you’re lonely or just looking for more out of life or life is getting too much to bear, don’t go down the road of depression (also know as the black dog). Get a dog; a real dog. But beware you will also get a buddy, a mate, a pal and a friend that will end up meaning the world to you and you will mean the world to your new puppy. So what is it? To me it’s now a life worth living. By the way after many, many, many, years of being alone, I now have two men in my life. My pup and my man. Thanks Chakotay for opening my heart to allow me to live again. This article first appeared in Talkabout Magazine, NSW, Australia
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www.baseline-hiv.co.uk
Centre For All Families Positive Health AFFECTED BY HIV/ AIDS? Don’t Be Alone, CAPFH Welcomes All!
. . . . . . . . . . . . . . . . . .
We Offer: Peer Support – Women’s support group
Invitation to tender The Centre for All Families Positive Health - CAFPH provides support & assistance to people affected by HIV/AIDS in Bedfordshire & the surrounding areas. With the current uncertain economic and political environment CAFPH is in the process of improving, developing and transforming the delivery of services in order to strengthen the organisation and to make it more efficient and effective. We require consultants with understanding of the sector to:
. . . .
an
To develop an updated strategic plan for CAFPH To develop new business plans for the different enterprises within the organisation including financial projections and cash flows To develop a marketing plan and strategy for the different enterprises within the organisation Deliver basic financial management training to senior staff
Deadline for submission is 5pm on the 1st of September 2011 For a full tender specification please contact CAFPH on the contact details below. Tel: Mobile Fax: E.mail:
+44 (0) 1582 726061/726063 +44 (0) 7944 406270 +44(0) 1582 726026 recruitment@cafph.org
Charity number: 1101399
Men’s support group Women and men’s support group One to one support (peer) Counselling - Youth, family and individual adult counselling available Disclosure Support Home/ Hospital Visits Hospital Accompanying Complementary Therapies Acupuncture, Aromatherapy, Massage Treatment Advocacy & Support Training & Workshops Information, Advice & Guidance Positive Self Management Programme (PSMP). Licensed by Stanford University Children and young People - Fun outings and Trips, Workshops, Playtime Support Floating Support - Housing Related Health Promotion Immigration Advice, Provided by Refugee Council twice a month. Service open to to all in the community Our premises are wheel chair accessible
CAFPH also provides services to the LGBT Community For more information: Tel: (01582) 726061/726063 07944 406270 (During office hours) E-mail: info@cafph.org
Charity number: 1101399
Just because a person is elderly, it does not mean they can’t have HIV I am going to share my life and experience of living with HIV and AIDS. I was divorced in 1979 and went to work in the construction industry in Zambia. Nobody knew much or talked about HIV in those days. I was living the life of a bachelor.
‘I am almost back to my old self -still a bit randy, but now need the help of Cialis!’ I had previously had a vasectomy, so I didn’t use condoms. I was fireproof or so I thought! I dated a few women, the girls in Zambia were beautiful; I had the life of Riley! I worked in Africa for about ten years, returning to the UK in 1989. I got a job in contract management and prepared to settle down. I still owned half the house that my ex-wife lived in, so, as we were still on speaking terms after our divorce, we agreed that I could live there for a while, until I found somewhere else. It was agreed, on condition that we led separate lives and that I would move out as soon as I could find alternative accommodation. I had my own room and did my own cooking. I didn’t really make a great deal of effort to find alternative accommodation. In 1996 I had to have by-pass surgery following a minor heart attack, so I postponed my house move while I recuperated. I seemed to be getting back to good health after my operation. I was playing golf and generally enjoying life (no lady friends though!). All through this time, my ex-wife constantly told me she thought I would be wise after living in Africa so long to have a blood test to check for HIV. Time would tell just how right she was. One day in 2002, whilst playing golf, I felt dizzy 74 Late Summer 2011
and had to walk off the course. This happened a few times and I was forced to visit my GP who arranged for me to be seen at the hospital. Over two or three months I had various outpatient appointments and then, eventually, I was admitted for more thorough examination. They decided I had had a mini-stroke, sent me home and told me to take an aspirin a day. I was still having dizzy spells and my condition worsened. I was fortunate that I was still living under the same roof as my ex-wife. She pulled out all the stops to help me by phoning and writing to my GP and hospital doctors, suggesting that they check whether my having lived in Africa could have some bearing on my condition. She got my daughters to help out by staying overnight with me, as I had become incontinent and demented. After struggling for almost three months like this, I was eventually rushed into Stepping Hill Hospital after suffering a fit. Once again more tests commenced, plus CT scans, MRI scans, etc. I do not remember any of this; I was completely demented and did not recognise anybody. Apparently, the doctors were just waiting for me to die! They were convinced that I was suffering from vascular dementia. If it had not been for my ex-wife badgering them to do a blood test I would not be here today. My ex-wife, along with one of my daughters, continued to suggest to the doctors that they check my blood, but they insisted they knew best and assured her that there was not much point in “going down that road” as one doctor put it. Thank God she did not give up, and, finally, when it was almost too late, the haemotologist decided to carry out a blood test, just to shut my ex-wife up! My test results came back positive. I had HIV. I was unaware of what was happening around
Barry Edwards
me. I was immediately transferred in to North Manchester Hospital where I was diagnosed as having AIDS-related dementia and placed in the care of Dr. Ed Wilkins. I very gradually came back to life and slowly regained my mental health. One day, a clinical psychologist came to visit me, and as we chatted, he asked me “If you were told you have an incurable disease, what would you do?” I replied there would not be much I could do. Two days later, Dr. Wilkins told me I was HIV positive. That was how I found out I was HIV positive; It was like being hit by a ton of bricks! Since learning that diagnosis, with the help of Dr. Wilkins and the GUM team at Stepping Hill, I have improved day by day. Apart from slight neuropathy in my feet and, visibly obvious my lipodystrophy (lost body fat from my bum and legs and gained it on my belly) – raising all kinds of comments like “When are you due?” all due to the HIV medication. I have tried to get back to my previous physique, but I have had no success whatever I try. I will have to live with that. I am almost back to my old self -still a bit randy, but now need the help of Cialis! I dance Salsa four nights a week and play golf, so I am fairly fit. One thing that I have learned from all this (and especially by the medical teams) is that HIV can strike anyone. Just because a person is elderly, it does not mean they can’t have HIV. There were four high-ranking Consultants involved in my case and they all assumed that because I was over sixty I could not be HIV positive. How wrong they were! This article first appeared in Positive Living Magazine
www.baseline-hiv.co.uk
Do you receive HIV treatment in London? Your HIV meds may be changed to help the NHS save money UKCAB is collecting reports about poor practice to help NHS London ensure equitable prescribing practice So, if your meds have been changed without your permission or a detailed discussion about why this is happening, contact UKCAB You can post to the UKCAB discussion boards in the public area at www. ukcab.net under the topic Changes to ARV Prescribing in London If you prefer, you can send an email to simon.collins@i-Base.org.uk alternatively, call the HIV i-base treatment phoneline on 0808 800 6013, Monday, Tuesday, Wednesday 12-4 pm or 020 7407 8488. Nobody should be switched against their will. You have the right to refuse a switch if you do not believe it is in your benefit.
David Rowlands 6. Black Health Agency Arise HIV support project Democracy House 609/609A Stretford Road Old Trafford Manchester M16 OQA 0845 450 4247 www.blackhealthagency.org.uk
Organisations providing information and support to people from African communities living with HIV. 1. Mayisha Social Support Group St Patrick’s Centre for Community Health Frank Street Birmingham B12 0YA 0121 446 1086 www.mayisha.org..uk
7. African AIDS Action PO Box 303 Rainham Essex RM13 8UW 07843 492210 www.africanaidsaction.org.uk
2. The Our Project PO Box 267 Bradford BD1 5XT 01274 740548 www.positiveyorkshire.co.uk 3. Waverley Care 3 Mansfield Place Edinburgh EH3 6NB 0131 558 1425 www.waverleycare.org 4. Black Health Agency Leeds Skyline Service 4th Floor Gallery House 131 The Headrow Leeds LS1 5DQ 0113 244 9767 www.leedsskyline.org.uk 5. Hope Gate Trust Suite M17 Premier Business Centre 47-49 Park Royal Road London NW10 7LD 020 8090 0425 www.hopegate.org.uk
8. Community Empowerment Trust 36 Codicote Drive Watford WD25 9QY 01923 446611 www.thecommentonline.org
03
9. Salthill Centre Grace Project 84 Bath Road Slough Berkshire SL1 3SR 01753 551958 www.salthill.org.uk/graceproject 02 06
10. Awaredressers Nottingham Linden House 261 Beechdale Road, Aspley Nottingham 10 NG6 0FN 0115 883 4246 08
04
01
09
05 07
See www.baseline-hiv.co.uk for a listing of support organisations across the UK
This reflects a small number of the valuable groups providing support to people living with HIV. If you can recommend a local HIV or hepatitis support group email: david@baseline-hiv.co.uk 76
Late Summer 2011
www.baseline-hiv.co.uk
GET INVOLVED IN AIDS 2012! REGISTRATION Open 1 December 2011 Standard fee deadline 23 February 2012 Late fee deadline 3 May 2012
GLOBAL VILLAGE AND YOUTH PROGRAMME SUBMISSIONS Open 1 December 2011 Close 10 February 2012
ABSTRACT SUBMISSIONS Open 1 December 2011 Open late breakers 19 April 2012
WORKSHOPS APPLICATIONS Open 1 December 2011 Close 8 February 2012
SATELLITE SUBSCRIPTIONS Open 1 December 2011 Close 31 March 2012
EXHIBITION SUBSCRIPTIONS Open 1 December 2011 Close 25 May 2012
More information and all submission, registrations, applications and accommodation bookings online at: www.aids2012.org
Follow us on Facebook: www.facebook.com/aids2012
Joel Korn
Livin’ In Da Ghetto Over the last few months, a group of young people managed to gain entry to the block I live in. The first couple of times I met them, I said they have 4 seconds to get out otherwise I would call the police. Kissing their teeth, wearing their jeans halfway down their ankles (that in my mid-thirties I find distasteful) and spitting at my shoe, they left half-heartedly.
“This is our ghetto and you, batty man, are just not ghetto enough to belong here.” Breathing a sigh of relief, I came to realise that I live in the heart of the ghetto in South East London. Hearing them shout “f**ck you batty boi”, I realised my work here was just beginning. If I was Dorothy, where was Toto? If I tap my red trainers together three times and let the ground swallow me now would I be transported back to North West London, back to the safety of my Jewish community and the smells of fresh bagels at my parent’s local deli. The next week they returned, I decided to be less punitive, I was interested in who these young people were, so I bought some coca cola and asked if they would like a drink; they looked very suspicious of me given our encounter the week before. I said “why don’t we all start by introducing ourselves?” One of them kissed their teeth saying “you need to get out. This is our ghetto and you, batty man, are just not ghetto enough to belong here.” I repeated my name and said “this batty man has a name you may use.” I then asked them if they knew where the word ghetto came from, they looked at me blankly. I told them where the original word ghetto came from.
Ghetto, defintion: ‘1. a densely populated slum area of a city inhabited by a socially and economically deprived minority. 2. an area in a European city in which Jews were formerly required to live.’ (Collins Dictionary 1990) When I started talking about the slums in South America this interested them some more. Eventually, they got bored of me talking and just left voluntarily. This got me thinking about the communities I belong to, how and why minority communities become ghettoised. I know that the original reason was segregation. In terms of being gay sometimes I think we forget that we can live equally in mainstream society, or at least have policies that protect us in doing so. Yet it somehow still feels safer sometimes to live in a gay bubble. When I received my HIV diagnosis, people welcomed me to ‘the club’, and the HIV community could be seen as another form of ghetto that I belong to. When I return home to my family, I have two feelings; one is my feeling of being overwhelmed and the other is I don’t want to live in a community where everybody has the same identity. Only by stepping out of the ghetto do I begin to feel energised, calm, and interested in what the next journey will bring.
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www.baseline-hiv.co.uk
Denis
TogeTher we can sTop The spread of hIV It’s time for us all to stand up and be counted. Join us on Facebook: www.facebook.com/gmfa.uk to meet the guys who appear in the campaign and to find out how you can be part of it.
supporT
the campaign and GMFA by making a donation. Visit www.gmfa.org.uk/donate.
GMFA, Unit 43 The Eurolink Centre, 49 Effra Road, London SW2 1BZ Charity number: 1076854
Andy Saich
LoveSpirit celebrating spiritual & sexual diversity Join LoveSpirit on 24th September 2011 - a gathering of 400 people celebrating and exploring LGBTIQ spirituality - at the University of London Union, tickets & more information available at www.LoveSpirit.org LoveSpirit is a community event that will be a meeting point and a melting pot. There is a grassroots emergence amongst gay people of spiritually-related activities in the UK, including tantra groups, meditation classes, pagan gatherings, naked yoga and social meet ups. Bringing these under one roof, and featuring a wide range of workshops and activities, LoveSpirit will show that spirituality is alive and growing within the queer community, that it is being practiced in many forms, and that whatever our faith path, magical or scientific path we can get along with each other. This is an event that honours LOVE as the common factor at the root of all spiritual endeavours. After four decades of political liberation and gradually improving social recognition of les-bigay-trans people, during which we have fought our way through a holocaust of dying and also created one of the most vibrant celebratory lifeaffirming social cultures on the planet, the time is ripe for some deeper exploration of who we are, of the gifts we bring to the human race, and of what ‘community’ actually means to us. Spirituality is a key, but often ignored, factor in HIV: During the ‘dying years’ the pressure of illness and loss pushed many of us to seek answers to the deeper questions of life. Intensities of emotion and upheaval brought some to transcendent states, and we realised that to have any hope to survive this time we had to live ‘positively’ in every aspect of our lives. We learnt that negative thought and attitude created disease and dilemma, while positivity – the thing we were ‘cursed’ with – could bring light. 80
There are long-term survivors of the crisis years on the organising team creating LoveSpirit. At root, spirituality is simply a word for the study and discovery of what we are, who we are, and how we relate to the world around us. Ask your questions, help others answer theirs. Whichever way we experience or define spirit we can learn from each other by listening to each other. LoveSpirit is an opportunity to tell our stories, meet others, share experiences and explore new ideas. The sort of questions that will be addressed at LoveSpirit will include;
. . .
What is the spiritual purpose of lesbian, gay, bi & trans people? What is our role in society? What is our experience of the link between spirituality & sexuality?
LoveSpirit is a project initiated by a group of gay men from diverse spiritual backgrounds, all sharing a common vision of the value and potential in queer spirituality. We seek to create an experiential event, where the body and soul and stimulated along with the mind. The day will start and end with a communal ceremony. There will be a programme of parallel workshops during the day - the programme will include a diversity of approaches, from talks and panel discussions, to body work, to movement, to meditation -and beyond. Around the formal, timetabled programme will be informal ‘open space’ for spontaneous encounters and ad hoc happenings. Workshops to include: Tantra – Law of Attraction – Chanting – Sharing our Stories – Guided Visualisation – Raja Yoga – Touch and Intimacy – Healing Spiritual Wounds – Qi Gong – Quakers – Abundance and Prosperity – Pagan Pathways – Taoism – Healing Massage – Radical Faeries….. www.baseline-hiv.co.uk
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HIV in numbers 33.3 million:
“Treatment is prevention.” Dr Anthony Fauci, Director, National Institute of Allergy and Infectious Diseases at the National Institutes of Health, USA
“We have made progress in AIDS every time when the science and activism were aligned.” Dr Peter Piot, Director, London School of Hygiene and Tropical Medicine
“History will judge us not by our scientific breakthroughs, but how we apply them,” Michel Sidibe, Executive Director, UNAIDS
the number of people estimated to be living with HIV worldwide
25 million:
the number of people estimated to have died with AIDS in the past 30 years
16.6 million:
the number of children estimated to have been orphaned by AIDS
15.5 million:
the number of women estimated to be living with HIV globally in 2007
2.5 million:
the number of children estimated to be living with HIV worldwide in 2009
7000:
the estimated number of people who newly acquire HIV each day
4900:
the number of people estimated to die with AIDS each day
82 Late Summer 2011
www.baseline-hiv.co.uk
HIV
Wouldn’t it be great if Jack could make plans for the future? Jack is HIV positive. In the absence of a cure for HIV infection, treatment requires life-long medication that can have unwanted side effects which negatively impact wellbeing and quality of life. We want to help Jack and millions of patients like him to lead as normal a life as possible. As well as HIV, there are many other conditions with unmet medical needs: it is Janssen’s mission to develop innovative treatments for serious illnesses such as schizophrenia, Alzheimer’s disease, hepatitis C, tuberculosis, psoriasis, arthritis, multiple myeloma, cancer and diabetes. We make extraordinary efforts so that people around the world can lead a better life.
Extraordinary efforts for a normal life.
© Janssen-Cilag Ltd UK/HIV/2011/0070 June 2011
CD4. Know the score.
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The British HIV Association1 now recommend starting treatment when your CD4 count drops to - or earlier, if you • have a high viral load and your partner is HIV negative • are at risk of cardiovascular disease • have a co-infection like hepatitis B or C • have an underlying AIDS diagnosis or • have a low CD4 percentage (<14%) which may put you at risk of an opportunistic infection
Talk to your Healthcare Professional about your CD4. References: 1. Gazzard BG et al. HIV Med 2008; 9: 563-608. Date of preparation: April 2010 001/UKM/10-03/MM/1659