Baseline Magazine issue 8

CUTS: NHS COMMISSIONERS PINCH PENNIES

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IS WHERE THE DRUGS ARE

VACCINE GURU BOWS OUT SUMMER 2011 ISSUE 8

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Weekends

Escape to the countryside for the weekend with other BASELINE readers

A chance to make new friends Discover new places Be energised

Future Dates: Snowdonia July 1st - 3rd 2011 Gower Coastline Sept 2nd - 4th 2011

BASELINE and Large Outdoors are offering readers a weekend away in some of the UK’s greatest beauty spots. Enjoy the tranquillity of the Peak District, Snowdonia or The Gower whilst making new friends and enjoying easy, guided walks at a pace everyone is comfortable with on the day.

What’s great about the weekends is the fantastic environments we visit, the fresh air and the chance to meet new people. What’s more, you don’t need any special kit.

For £85 you get two nights accommodation in an exclusively-booked venue, breakfast on Saturday and Sunday and a three course evening meal on Saturday evening.

To book please visit:

www.largeoutdoors.com/baseline For more information call 0161 834 8955

largeOutdoors.com

In this issue A word from the editor

04. bylines

London commissioners have recently slashed HIV prevention budgets. For years we have disinvested in HIV prevention and things just got a whole lot worse. Every infection that is prevented saves £280-380,000 in healthcare costs.

06. drop-us-a-line

After getting it wrong in prevention, flat-lined funding for treatment is ensuring that new prescribing protocols that put cost at the heart of patient care have been introduced in London.

The changes are discussed in detail in this issue.

Chris O’Connor takes a look at home delivery of medicines- a way you can do your bit to save the NHS money.

Toni Montinaro offers some insightful tips on how LGBT people can stand up and have their views heard.

Join our e-subscribers online at: www.baseline-hiv.co.uk

08. headline: UK 16. headline: global 20. penny wise?

24. changes in services 28. beer goggles Johnny 30. vaccine visionary bows out 34. hotline 36. home delivery: widens reach 40. myline: Joel Korn 42. talking therapies: Lisa Power 44 i-base Q & A 47. headline: treatment 51. BASELINE congratulates 52. GMFA Messaging Service 57. dear Susan 58. lifeline 60. headline: hepatitis 62. headline: healthy living 64 partner study

Baselinetweet

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

BASELINE

Sub-editor:

Joanne Russell

Business Development Manager: David Rowlands david@baseline-hiv.co.uk

Design & layout:

Gareth Williams design@baseline-hiv.co.uk

Editorial Administrator: Publisher: Tom Matthews

Summer 2011

Fieldhouse Consulting Limited

66. finelines & numbers

For magazine and web advertising please contact enquiries@baseline-hiv.co.uk Thanks to all the clinics who have agreed to distribute free copies of BASELINE; if you’d like to change quantities email us at: editor@baseline-hiv.co.uk Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in BASELINE is not to be taken as any indication of health, HIV status or lifestyle.

www.baseline-hiv.co.uk 03

deadlines

for the next issue Copy 28/07/2011 Robert Fieldhouse is thankful to his growing team for all the time and effort they out in to make BASELINE a success.

nine years as a Project Manager at GMFA, the gay men’s health charity.

Susan Cole has worked in communications Jane Phillips Tweeting, Facebooking and fiddling and marketing for NAM and UKC and is a 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.

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.

trained research psychologist.

Dr. Richard S. Ferri is an out HIV positive AIDS clinical specialist practicing primary care HIV medicine in the United States. Ric joined the BASELINE team last year as a featured blogger. He is now available for questioning on the BASELINE website www.baseline-hiv. co.uk

Gareth Williams splits his time between a Joel Korn contributes regularly to BASELINE. 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.

He is a Support & Development Worker @ River House Trust, Men’s Therapeutic Group Worker @ Mind Greenwich and Therapeutic Counsellor MBACP.

Joanne Russell. In her twenties she was a journalist at Reuters. In her thirties she found happiness as an English teacher. She keeps her journalistic hat on by helping out at BASELINE now and then.

Simon Collins is a leading HIV advocate. He

Tom Matthews set up BP Leeds in the 1980s and is now a trustee of ABplus in Birmingham and the National long-term survivors group.

heads up HIV i-Base.

Toni Montinaro MBE is the new CEO of Staffordshire Buddies, previously Toni was the manager of Derbyshire Friend and has worked within the HIV sector as well as public health and social care as a social worker.

Lisa Power MBE is the Policy Director David Rowlands having worked across a for Terrence Higgins Trust. She has been 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.

Dónal Heath has done many things to earn a crust, some of which he’s proud of. Most relevant to his contribution to BASELINE is role for the last 04 Summer 2011

involved in human rights for the past 25 years, as a writer and activist for lesbian and gay rights in HIV and sexual health. She was a founder member of the Stonewall Group, the UK’s leading gay rights lobby group, and was General Secretary of the International Lesbian and Gay Association, being the first person to speak at the United Nations on behalf of gay rights. www.baseline-hiv.co.uk

You WANT To be Yourself for Your fAMIlY

let’s talk MENTAL wELL-bEiNg

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.

A Promise for Life

Date of preparation: November 2009 AXKAL092991

editor@baseline-hiv.co.uk Good morning Robert Thank you for making the recent BASELINE weekend possible. I thoroughly enjoyed it and, more importantly, I genuinely believe that it has changed peoples’ lives. It was great to get to know you a little better after years of our paths crossing but never really meeting. Your spirit is infectious.

Love and best wishes Andy Dear Mr Fieldhouse I am writing to enquire into the possibility of ensuring that we receive a good stock of your publication, whenever possible for our clinic.

Indeed some of the HIV consultants would appreciate having some backdated copies as well.

Your publication is extremely popular, informative and well read. It constantly brings new and interesting perspectives to issues that otherwise might be dismissed, and for this I thank you.

Kindest regards, Maertin McHale Information Systems Officer (ISO), Department of Sexual Health (DOSH) Whipps Cross University Hospital NHS Trust, London

Dear BASELINE, Had a fantastic time at your weekend in the Lake District. Although I was unsure of what I was letting myself in for. As I arrived at the hostel I soon realised that I had nothing to fear - everyone was very nice and very welcoming. There was a nice manageable number in the group, and the atmosphere was very relaxed. It was just what I needed - a chance to meet other guys living with HIV and sharing experiences. The walking was not strenuous either, and it made chatting to different people easy. At the end of the weekend I had made some new friends and also decided that I had to change my style of life and get on with living it! In January I moved from rural Scotland to South London.... a new adventure begins.

Thank you, BASELINE, for opening my eyes and my mind.

A very grateful Brian

Dear Robert I came across your magazine at my clinic last month. You probably don’t recall but you gave me treatments advice at Body Positive in Earl’s Court back in 1998. That advice, (nevirapine/AZT/3TC) frankly, helped save my life. I am glad to see you are still actively involved in HIV. Please add me to the database to receive the magazine on email.

Best to you, Mark

06 Summer 2011

www.baseline-hiv.co.uk

Follow the Yellow Brick Road... and join Terrence Higgins Trust on the Walk for Life 2011.

On 5th June 2011 Europe’s largest sponsored walk for HIV and AIDS arrives in Potters Fields Park; and this year we’ve come over all Toto and Dorothy!

For over 20 years, Walk for Life has been making a big noise about HIV and providing vital support for people living with HIV in severe financial need. Help us to make this year’s walk bigger and more colourful than ever!

Find out more and register now at www.walkforlife.co.uk or call the registration hotline on 020 7812 1665.

Terrence Higgins Trust is a registered charity in England and Wales (reg. no 288527) and in Scotland (SC039986)

news: UK PrEP Roll-out – Debate Rolls On The feasibility, sustainability and costeffectiveness of a wide-scale roll-out of preexposure prophylaxis (PrEP) for men who have sex with men (MSM) is being debated in the UK. Men who are HIV negative but vulnerable to HIV infection could be protected by taking a single dose of Truvada (tenofovir/FTC) daily.

The roll-out is being considered after the iPrEx clinical trial involving 2,500 MSM was found to have 44% fewer HIV infections using Truvada daily for an average of 14 months compared to a placebo. Effectiveness rose dramatically with adherence; 73% fewer infections when taken 90% or more of the time and over 90% protection with full adherence in smaller groups.

The driver for PrEP in the UK is the stubbornly consistent number of new MSM HIV diagnoses, “Doing nothing is not an option” Noel Gill of the HPA said, it was with “...grave concern” that he noted that new HIV infections could be as high as 3,000 in 2010.” The test and treat approach is containing but not eliminating the epidemic, we have to face up to that.”

Any study will include Intensive Combination Prevention (ICP) behaviour interventions involving counselling on safer sex and condom use, HIV/ STI testing/screening, web-based promotion and accelerated partner notification.

The HPA say the UK is uniquely well suited to investigate the suitability of PrEP because of its network of sexual health clinics offering open access and high attendance of MSM. One scenario could be using ten clinics; with five offering PrEP and ICP, and the other five offering just ICP over a two-year period. The trial could involve up to 7,000 men with half on daily oral PrEP. France is adopting a different approach with a trial later this year using PrEP/Truvada intermittently, before and after sex.

08 Summer 2011

Opinions at the BHIVA meeting varied on the merits and applications of PrEP. One view was that rolling out PrEP was “running before we could walk” after only one trial – with many unknowns in a ‘real world’ non-trial setting. Others thought it was difficult to accept healthy HIV negative people receiving an expensive drug, rather than seeing it as an individual’s responsibility to protect themselves through existing preventative measures. The cost of such an initiative was a concern with the price of Truvada for treatment currently at £300 per month.

PrEP was compared to the contraceptive pill, taken daily to avoid an unwanted event. Another comparison was made to the introduction of the clean needle exchange programmes of the 1980s as initially being counter intuitive but becoming a public health success. The fact that a proportion of ‘hard to reach’ vulnerable MSM do not access sexual health clinics is a concern.

Sheena McCormack of the MRC Clinical Trials Unit and Dean Street Clinic has been asked by BHIVA and BASHH to coordinate the working group on PrEP, working with Dr Martin Fisher from Brighton and Dr Sarah Fidler from St Mary’s. They will draft a Position Statement, bringing together the different strands of opinion. A vital element, she says, is the opinion of the gay men’s health community - if your organisation has a role to play, please contact Sheena at smc@ctu.mrc.ac.uk

Chris O’Connor

Poppy Project lose Funding

The Poppy Project, a pioneer of specialist services for women subjected to sexual trafficking is fighting for its life. Run by the Eaves Housing charity, more than 700 women have been assisted since the project started in 2003, 15% of whom are women living with HIV, Poppy informed BASELINE. The project has lost out on a bid from the Ministry of Justice to the Salvation Army who will ‘gate keep’ the contract worth £6million and will subcontract specialised services.

Eaves said the move marked a change in the way government supported care for the victims of trafficking, ‘they were after a bare minimum service not a specialised service.’

The charity helps women with rehabilitation and counselling, offers computer computer skills training and advice on entering the job market. Eaves Housing has helped secure more than 500 years imprisonment in convictions against traffickers.

The Poppy Project fought the case of Mansa, an HIV positive Ghanaian woman who arrived at Heathrow in 2003 and was held against her will and sexually abused for four years. On April 1st this year Mansa was facing deportation from the UK without medication. The Poppy Project argued that she would be better getting support in the UK rather than face possible further abuse in Ghana.

On the morning of her scheduled deportation flight from London on April 1st 2011, Poppy contacted the pilot’s union; leaflets were printed and passed to passengers at Heathrow and all legal avenues explored. The government backed down.

The project say they need to raise £450,000 by the end of June to continue their work.

Ealing New Fill Clinic Closes

Ealing Hospital, West London, the first centre in the capital offering NHS New-Fill treatment to help HIV positive people with lipoatrophy, severe facial wasting, has been ordered to close its service by NHS funders.

The move is part of a centralisation and specialisation of New-Fill services to central London clinics. Patients undergoing treatment at Ealing will be seen until the end of May. Professor Stephen Ash of Ealing Hospital was one of the first in the UK to use the New-Fill procedure, and over the last nine years has treated ‘hundreds’ of people.

Professor Ash has asked NHS London commissioners where he should now refer patients who need New-Fill and is still waiting for a reply.

In 2004 the NHS accepted the case that New-Fill treatment was a necessary tool for positive people with facial wasting – it can be highly debilitating leading to depression and stigma. The procedure involves the injection of polylactic acid into hollows in the face that then builds up collagen and fills out.

‘It gives people confidence to rebuild their lives, continue to function at work or go back to work and enjoy life,’ says Professor Ash. ‘I also think it’s a reasonable assumption that people will continue to take their combination treatment, when they know there is help with their condition.’

He added, ‘I don’t understand where the cost saving will come from, I do it for free, we just pay for the cost of the New-Fill product; at other clinics nurse costs have to be added and patients will have to travel much further ‘ A course of New-Fill costs £300 including VAT. Typically a course might be 3 to 4 treatments every two years.

The Harrison Wing at St Thomas’ is now seeing more lipoatrophy patients from King’s College Hospital.

Dr Nick Larbalestier, at the Harrison, said that many of the New-Fill procedures were re-treatments for people who had been living with HIV for many years and been exposed to older drugs, particularly d4T. He added that some people as they age are seeing their lipoatrophy worsen as the fat loss becomes more marked. www.baseline-hiv.co.uk 09

news: UK Positive Couple Assaulted

Two people living in Sheffield have been the victims of an assault – directly linked, they say, to their HIV status and have had to flee the city. On March 11, Maria, living with HIV for 12 years, was punched to the ground sustaining bruising to her face, arms and legs.

The attack was the culmination of a hate campaign by a neighbouring family which began after Maria’s partner Carlos, also HIV positive, was interviewed in the local paper about his work around HIV prevention, says Maria. The Police are investigating the incident.

Speaking to BASELINE from the family home in Spain where they fled after the attack, Maria said, “There was a big interview in the local paper, the Sheffield Telegraph, Carlos talked about his music, his band ‘CD4’ and his work for HIV prevention, he didn’t hide that he was HIV positive.”

“The next day there were eggs smashed over the house windows and the car. Since then there have been small and big incidents. The family never mentioned HIV but they shouted a lot of things I don’t understand. I know that they know. It all started after the interview appeared.”

Carlos and Maria have no regrets about the interview that led to the assault. “No we don’t regret it. We have lived with HIV a long time. Carlos, 25 years positive, – we are the ones who have to do our bit, We don’t want to go back on our principles. They surrounded Carlos and he has peripheral neuropathy and is unsteady on his feet. He has no strength. ” Dr Alicia Veddio, Infectious Diseases Consultant at Royal Hallamshire attended Maria on the night of the attack and confirmed her injuries, adding that Maria was frail, underweight and had the severest lipodystrophy she had seen.

“Carlos and Maria are raising awareness of HIV, and the local media has been very positive, but it is not enough – HIV is a chronic illness, like diabetes, attitudes are changing but there is still too much ignorance,” said Veddio.

The couple have received support from a social worker too, and say they are returning to Sheffield, but have been left shaken by the attack, “I cannot find the right words to say, how a whole family can get together and hurt us. No neighbours came out to help. I had to call the police myself.”

10 Summer 2011

Walk for Life 2011

Walk for Life, previously run

by HIV charity Crusaid and now Terrence Higgins Trust, following the two charities’ merger last summer, will begin the 10k route at 12:00am.

Participants walk a picturesque, which starts in Potters Fields Park next to Tower Bridge, continues up to Covent Garden via St Pauls and Waterloo Bridge, along the South Bank: all funds raised go to the Hardship Fund supporting people living with HIV in poverty. www.walkforlife.co.uk

Toughened Rules on NHS Debt for Overseas Visitors

The UK government is proposing to toughen rules on accessing NHS care by overseas visitors to the UK. It is proposed to establish a £1000 threshold, if this debt to the NHS is not paid back anyone owing such an amount would not be allowed to visit or stay in the UK. Failed asylum seekers not on the registered home office support scheme would not be exempt from charges.

The length of time a UK resident can spend abroad and still receive free hospital treatment is extended from three to six months. A further review is planned

Chris O’Connor

FEM-PrEP Halted

A study in Africa to see if taking a daily pill would prevent HIV infection in women, has just been halted because partial results showed no benefit. There were 23 new HIV infections seen in the women receiving placebo and 23 infections seen in those taking Truvada.

The FEM-PrEP study was a large randomised controlled trial involving 1,951 women from South Africa and Kenya aged between 18 and 35 taking oral daily Truvada or placebo. Reasons for the result, say trial organisers FHI, could be low adherence to taking the pill, or a biological reason for the lack of effect in women.

FHI say the Fem-PrEP trial cannot say whether Truvada failed to offer protection as final analyses have to be carried out, however FHI were ‘surprised and disappointed’ by the outcome. Although when final results come out the trial will make a strong contribution to the understanding of ARVs for HIV prevention.

The recent PrEP study iPrEX looking at men who have sex men had shown protection rates of 42% and much higher with good adherence. FHI say the results do not change the usefulness of Truvada as prevention. The UK is considering the value of daily PrEP (see page 8).

Adherence has been an issue with prevention trials before; in the tenofovir microbicide gel trial CAPRISA 04, and in iPrEX. Before the FEM-PrEP trial started, researchers interviewed women to identify barriers to the use of a daily pill. There was an opportunity for trial participants to practice taking a daily pill in a ‘run in’ period; a vitamin pill was taken and adherence issues discussed.

Although adherence was reported at 95% stored blood samples will be analysed to measure the levels of tenofovir and will be a good indicator of true adherence say the study team.

Pregnancy rates, higher in the Truvada arm than among women randomly assigned to the placebo were ‘unexpected and inconsistent’ with known drug interactions involving Truvada and contraceptive hormones say FHI. Possible explanations include different pill adherence by group, previously undefined drug-drug interactions, chance, or a combination of factors. FHI will conduct further analyses.

Two more PrEP/Truvada trials are underway with results expected in 2013.

VOICE – Vaginal and Oral Interventions to Control the Epidemic – is an ongoing trial involving 5000 women in Uganda, South Africa and Zimbabwe testing Truvada as well as the ARV tablet tenofovir and a vaginal microbicide containing tenofovir in gel form.

The Partners study is testing the use of PrEP in 4700 male-female couples in Kenya and Uganda where one partner is HIV positive and one partner is HIV negative, comparing oral tenofovir against oral Truvada. www.baseline-hiv.co.uk 11

news: UK BHIVA 2011 News in Brief...

BHIVA 2011 basked in the Bournemouth sunshine, although grey clouds of cutbacks and prescribing restrictions loomed, rays of hope for people living with hepatitis C shone through. This is just a snapshot of the huge range of studies presented at BHIVA. See www.bhiva.org for abstracts and presentations.

Ian Williams was succeeded as BHIVA chair

by Homerton’s Jane Anderson.....Mark Nelson looking at hepatitis C (HCV), hailed a forthcoming treatment revolution although the new pipeline would be a “nightmare” of complexity and raised the spectre of HCV drug price wars. Doug Dieterich said that the recent Berlin hepatitis conference would come to be regarded as the Vancouver for HCV; at Vancouver in 1994 researchers showed the power of triple therapy for HIV, Bournemouth heard there is an avalanche of effective new HCV meds just around the corner……...Simon Barton talked the conference through Patient Tariffs and PbR (payment by results) although some were lost along the way in what is a complex issue.

Against the accepted wisdom Mike Rayment made a case for the clinical value of renal biopsies…The first trial looking at neuro-cognitive performance in HIV asymptomatic patients on treatment presented by Lucy Garvey reported; 19% showing some impairment compared to 16% in the general population scores, a much smaller gap than many previous studies…..the breakfast meeting looking at rolling out PREP (pre-exposure prophylaxis) in the UK produced a lively discussion. (see page 8).

The use of laboratory tests to study nondisclosure of HIV status in GUM clinics, presented 12 Summer 2011

by Emma Savage of the HPA revealed 7.2% of 95 people who had a syphilis test had not disclosed they were HIV positive. Traces of ARVs were found in the samples, which may be slightly overestimating the proportion of people with undiagnosed HIV in the UK, though this overestimation is thought to be ‘moderate’ say the HPA. The HIV care of people with HIV in Immigration Removal Centres, (IRCs) for men at Harmondsworth and Colnbrook was audited. Of people referred, 15% were removed from IRCs before they could be seen by a medic. Kalpana Sabapathy reported 116 men from the afore-mentioned IRCs were treated at Hillingdon Hospital over two years. Twenty four people with HIV were deported; contrary to guidelines, no prior notice was given in 8 cases and less than a week’s notice in 5 cases. Of 8 people given prior notice - none received the three months emergency supply of ARVs recommended - and only half had letters of diagnosis or advice on treatment at their destination.

ARVs should be given early in diagnosis as a public health measure to positive people with recurrent STIs was the conclusion in a study from St Thomas’ presented by Martin Toby. Ten per cent of those screened were found to have an STI and of these 45% had more than one STI event, and 39% detectable HIV, 16% were also living with HCV.........

Several posters showed the advantage of testing women for HIV when they undergo colposcopy, unfortunately the Colposcopy Society does not see HIV as their business.

Thomas Quinn, medicine man from John Hopkins in the USA gave a comprehensive overview of HIV prevention tools, finishing

Chris O’Connor

with a pros vs. cons of PREP, concluding that a combination of approaches would succeed…

Brian Gazzard, presented his Life in HIV, starting off in 1979 when he saw what turned out to be his first HIV patient ‘and my life was transformed, going from telling people they would unfortunately die, to these days saying “…as long as you take the pills you will live a normal lifespan” -– it really is a miracle.’ He mentioned that although “‘it is criminal not to take price into account, with finite resources”, but it was a ‘disgrace’ that funding for lifesaving drugs globally was threatened.’

Nick Paton looked at when to start ARVs saying SPARTAC, a trial testing the theory that short-course treatment in acute infection confers a long-term survival benefit, will report in July and that recruitment to the ‘daddy of when- to -start’ trials START was well underway…Ed Wilkins looked at what ARVs to start with noting that BHIVA Treatment Guidelines last updated in 2008 are still being accredited by NICE: He said that the new tendering process in London producing ARV prescribing rules in a cost saving exercise, ‘could determine ARV strategy more than BHIVA Guidelines – if we are not strong in rebutting it’, with fixed-dose therapy under threat from generics and less prescribing freedom for clinicians.

BASELINE would like to thank Mediscript Limited, Gilead Sciences Limited and Merck, Sharp and Dohme Limited for making our attendance at BHIVA 2011 possible.

HIV Service Cuts Go Deep

HIV prevention, support and expertise are being ravaged by spending cuts. The cuts come at time when the Health Protection Agency say HIV transmission rates continue to climb.

Funding for gay men’s HIV prevention in London has been cut by 43%. According to Mark Delacour, director of the LGBT umbrella group the Consortium of LGBT VCOs,,they were given two working days by PCTs to accept or reject the offer. Delacour says that HIV prevention work in London accounts for one per cent of the total HIV treatment and care budget. ‘If these cuts result in even a handful of people becoming infected then the cost of treatment would mean that PCTs wont have saved a single penny.’

THT CHAPS Cymru (Wales) funding has been cut again; after its £80,000 budget from the Welsh assembly was cut to £30,000 last year, - this has been now been lost. THT Cymru has been left with £24,000 to fund gay men’s HIV prevention throughout Wales.

The Crescent, offering support and care for 250 positive people in St Albans could be closed in June with no consultation claim supporters.

Hertfordshire County Council and the local PCT are moving some of the services to Ware. The Friends of the Crescent Group were shocked at the news and fear that 25 years of experience will be lost. They have also expressed anxieities about the ability of service users to travel to Ware. http://savethecrescent.wordpress.com Body Positive Dorset, based in Bournemouth, which has just hosted the BHIVA conference has had to reduce its services due to budget cuts.

Services will now be offered four days a week, Monday to Thursday after a 27% cut to its budget. www.baseline-hiv.co.uk 13

Chris O’Connor

news: UK Notifying Partners – New Approach

Treatment Black Holes for Detainees

‘Detained and Denied’ a report by the Medical Justice Group, outlines 35 cases of people detained in Immigration Removal Centres (IRCs) who have not received their HIV treatment. Breaches in confidentiality and poor access to clinicians were also cited in the report.

Advice drawn up by BHIVA and The National Aids Trust (NAT) is being ignored says the report. The NAT has asked the UK Border Agency to work with them on an audit of all people who are detained to assess the quality of their care.

NAT also called on the UK government to investigate the breaches of care in ‘Detained and Denied’, the failures at Yarl’s Wood IRC and to suspend the detention of anyone with HIV at Yarl’s Wood.

The report precedes a study by doctors at Harmondsworth Hospital presented at BHIVA 2011, which revealed HIV treatment ‘black holes’ and guidelines for HIV positive people being removed from the UK were being ignored. In a number of cases short term supplies of ARVs, letters of diagnosis and care, and information on where to access treatment in the country of destination had not been given to people on their removal. See: www.medicaljustice.org.uk/content/ view/1721/89/ 14 Summer 2011

The Sexual Health Messaging Service. A pilot scheme to notify the partners of gay men diagnosed with a sexually transmitted infection has started in April. Men who are diagnosed can notify previous sexual partners via an on-line system. GMFA’s research says that 99% of gay men want to know if their partner has an STI and 97.5% want to know if their partner is diagnosed HIV positive Existing partner notification systems often require those diagnosed with an STI to contact their partners direct, sometimes using a pink slip issued by the clinic. GMFA’s research shows these systems often don’t work. Not having partners’ contact details, embarrassment, not wanting the partner to know about their STI status, and not wanting to see the partner again were some of the main reasons for men not notifying sexual partners. Of those who did notify their partners, only 65% notified all their partners.

‘Making that awkward call or email can be difficult’ acknowledges GMFA’s Matthew Hodson; as a result some men choose not to tell, even though they know they should. We’ve made the process as easy as possible by doing the rest of the work for you – all you need is a contact for your partners and we’ll take care of the rest.’

Four clinics in London will participate in the pilot: 56 Dean Street, Homerton Hospital, The Lloyd Clinic at Guy’s Hospital, and St Bart’s Hospital. Also taking part are The Sheffield Royal Hallamshire Hospital, The Hathersage Centre in Manchester, and the Royal Sussex Hospital in Brighton. Men can use the service to send messages to members of the four participating gay dating websites (Fitlads, Gaydar, Manhunt and Recon) plus the cruising app, Bender.

Members of these websites are urged to opt-in to receive notifications when they are sent the invite to do so. The scheme is funded by the Elton John AIDS Foundation.

www.baseline-hiv.co.uk

news: global WikiPorn Leak

The HIV status of most of the adultindustry performers in California has been published on a website known as ‘Porn Wiki Leaks’. Earlier this year, the site revealed the names and addresses of 15,000 current and former porn stars. The data reportedly came from the Adult Industry Medical Healthcare Foundation, (AIM) which also performs tests for sexually transmitted infections. State law says all performers are required to be tested for sexually transmitted infections every 28 days.

The porn industry performers argue the test results must have come from AIM because stage names they used only at the clinic were published on Porn Wiki Leaks—and with their real names attached. Two former porn actresses sued AIM over the patient database leak last year, arguing it violated Californian patient privacy law. It is thought that there are only 1200 to 1500 performers currently working in the adult industry in California; many people outed in the list are people who have moved on from the industry. AIM was founded 14 years ago by former porn actress Sharon Mitchell.

‘Project Prevention’

A US based group that pays drug users in the US to undergo sterilisation, is planning to offer its service to women living with HIV in South Africa. The SA Health Department said they would approach the Human Rights Commission if the project started operating in SA. The Project is already operating in parts of Kenya, where it is paying women living with HIV U$40 to accept long-term contraception.

16 Summer 2011

Affordable Drug Lifeline ‘Under Threat’

Thousands of people from across Asia marched in New Delhi in March to demand that provisions in the draft Free Trade Agreement (FTA) are dropped.

The draft would restrict access to currently produced generic drugs and make it more difficult for new generic drugs to be made.

South African activists are opposing the FTA between India and the European Union (EU) that they say “threaten the supply of affordable medicines to millions of people in the developing world.”

TAC General Secretary Vuyiseka Dubula said, “The proposed India-EU FTA threatens the steady supply of generic drugs, and our ability to access new, innovative medicines. Without generics, thousands, including myself, would not have access to ARVs.” Currently generic manufacturers are required only to show quality and bio-equivalency to an existing medicine for registration. New rules would prevent generic companies from relying on clinical trial data of a registered drug during the period of data exclusivity. This requirement will delay the registration of generic medicines as it will be too costly and, in most cases, unethical to repeat clinical trials.

“Whatever the patent status of a drug, data exclusivity provisions will apply,” Jonathan Berger of SECTION27 told BASELINE adding, that the provisions will apply even in cases where compulsory licences have been issued to allow the sale of generic medicines during the life of a patent.

The EU has also been pushing policies that allow for the seizure of generic medicines in transit from India through Europe to other countries, even if those products may be lawfully sold in the receiving countries, such as those in sub-Saharan Africa. www.doctorswithoutborders.org/news - search for ‘Marching for Generics’

Chris O’Connor

Libyan HIV Crisis

Turmoil in Libya has meant HIV drugs are in danger of not reaching people with HIV in Eastern Libya. “There are 450 children and only a week’s worth of drugs. Most of them are in Benghazi, people have forgotten about them,” one father has been reported as saying. The families of HIV positive children have appealed to international aid agencies for help.

On February 24th the newly resigned Libyan Minister of Justice said that the infections were the responsibility of the Gadaffi regime. Hundreds of children acquired HIV at a Benghazi Children’s Hospital in the late 1990s. The Libyan government blamed western doctors and nurses. European agencies said that reused needles and Libyan blood products had been screened inadequately.

The regime charged five Bulgarian nurses and a Palestinian doctor who worked at the hospital with deliberately infecting the children and sentenced them to death. In 2007 they were eventually released.

The current crisis has moved Libyans to speak out about the HIV outbreak at the Al Fatih Paediatric Hospital. It is thought 60 have died since; with others seriously ill. During an interview with a reporter from the blog site The Daily Beast one mother of two HIV positive children, who is also HIV positive herself, received a telephone call from a government representative warning her to keep quiet, “I have been quiet 13 years and I’m tired of it,” she replied.

It is difficult to estimate the rates of HIV in Libya.

The School of Tropical Medicine, Liverpool is now involved in a project to evaluate the epidemic and develop a national HIV strategy for Libya.

A study at the Central Hospital in Tripoli, in December 2010, looked at 14,105 potential blood donors between 2005-2008: 12.8% were found to be hepatitis B positive, 7% hepatitis C positive and 0.9% HIV positive (or over 60,000 of the population HIV positive). A large migrant population from subSaharan Africa could push this figure higher. In Libya, 90% of all known HIV infections are thought to come from dirty needles. www.baseline-hiv.co.uk 17

Chris O’Connor

news: global Activists in South Africa have welcomed the move to voluntary HIV testing for school children, but warned that proper planning and protection of human rights must be in place. The Treatment Action Campaign (TAC) and other HIV activists groups welcomed the secondary schools initiative. A TAC statement says testing among fourteen year olds is vital with HIV prevalence and teenage pregnancies at high rates.

However, support for pupils who are diagnosed positive and continuing education and for those who test negative have to be in place, as well as confidentiality and counselling services.

four African countries; Djibouti, Mali, Zambia and Mauritania. An independent review panel has been set up.

San Francisco health officials are ‘cautiously optimistic’ that new HIV cases are in decline.

Estimates of 736 new diagnoses are lower than predicted. The city’s HIV incidence rate now stands at 0.09%-a 31% reduction since 2006. Three factors are in play, say observers: Sero-sorting, (despite spikes in STIs, HIV rates show no such similar spike), starting ARV treatment early, as soon as possible after diagnosis and, less migration of gay men into San Francisco.

Drug prices in California have risen 275% since 2000; three times the rate of patient growth.

The AIDS Healthcare Foundation said that the California state finance controller has sent letters to drug company chiefs asking for a price reduction. Discounts agreed by drug companies last year have expired.

HIV partner notification (PN) in Malawi is ‘effective and feasible’ according to a study published in JAIDS April 2011. The authors say that partner notification in Africa has not been evaluated before. 245 patients were randomised to one of three PN methods: self referral where people notify partner themselves, contact referral, patient given ten days to contact partner or health The Global Fund to fight AIDS has been hit by clinic will notify, and provider referral where clinic the decision of three donor nations; Germany, will notify partner directly. The patients identified Spain and Denmark to temporarily suspend 302 sexual partners, 107 of whom returned for HIV contributions worth $180 million. The Global testing and counselling – 67 were HIV positive, 54 Fund has said that $34m is unaccounted for in of them being a new HIV diagnosis.

Elizabeth Taylor has left the bulk of her fortune to AIDS charities, the New York Times has reported. Estimates of film legend Taylor’s fortune range anywhere from $375 million to $1 billion. Her jewellery collection was valued at £150 million ten years ago. AmfAR, for whom she was founding Chairman, and the Elizabeth Taylor AIDS Foundation have been mooted as the major beneficiaries.

Universally praised for her AIDS activism; Taylor was most vocal in the early 1980s when few others would speak the word AIDS. Attacking the Republican presidents Reagan and Bush for their inaction; “Your policies stink and you know it,” she famously said.

18 Summer 2011

www.baseline-hiv.co.uk

19

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 20 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 www.baseline-hiv.co.uk

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 £170,000 million on HIV care; 60-70% 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.”

21

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 22 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

23

Changes in HIV Services, Health and Social Care...

What might it mean for you and me?

The next few years will see real changes to the way our health services in England are delivered, treatments are provided with health and social care services merging to provide joined-up services and support.

‘The partnership and others are challenging commissioners who are cutting services.’

As services are being reviewed, reorganised and cut this has led to our voices as patients, clients, users and as members of the public being potentially overlooked or not listened to. At the same time knowledge and use of our rights has increased through equality legislation and increased awareness of our ‘patient’ rights.

If you want to know more about the changes that could affect you and also you want to have a say around your needs and the services you want whether you live in London, Leicester or the Yorkshire Moors then read on.

Supporting those of you who belong to the lesbian, gay, bisexual or transgender communities and bringing a new voice to challenge poor practice and improve services in health and social care is the National LGB&T Partnership for Lesbian, Gay, Bisexual and Trans (LGB&T) people in England.

Funded by the Department of Health the partnership was developed to ensure services understand and respond to the real life needs and issues of LGB&T people including those of us living with HIV. The partnership is steered by national, local and regional groups e.g. the North 24 Summer 2011

East (GADD), North West (LGF, who hosts us), Derbyshire Friend (Midlands) to London and those with a national remit (GMFA , PACE and GIRES).

The partnership supports work around health and social care e.g. housing, domestic abuse, mental health, carers, as well as HIV, drugs and alcohol programmes.

The partnership often highlights the potential changes for people e.g. benefit reform, health provision, new assessment criteria and changes in HIV services and what it means for people living with HIV who are finding information, support and complimentary services reduced at exactly the same time that there is change and upheaval.

Nationally and locally we see services run

by AGE UK, Citizens Advice Bureaus and local advocacy groups having both reductions in services and their opening times. In rural areas this can be a significant loss of services all at the same time. Reorganisations and improvements in services and what we can have as patients often mean a bewildering amount of choice and treatment with fewer people to guide us in that choice and what we can expect.

‘You do have the power to make a difference.’

The partnership works to ensure health inequalities experienced by LGB&T people and other groups are kept high on the government’s agenda by influencing policy, practice and the actions of government and statutory bodies for the benefit of all LGB&T people across England.

Toni Montinaro, MBE

They have also campaigned locally with other organisations to challenge potential cuts in services. The review of London Council’s and Home Office funding led to groups like Stonewall Housing (housing support), GALOP (legal advice and support), Broken Rainbow (same sex domestic abuse) facing a serious threat of closure or large reductions in funding. The partnership and others challenged the process and contributed to their funding being secured. In many other areas the partnership and others are challenging commissioners who are cutting services (mostly statutory LGB&T youth work, psychosexual counselling as well as HIV prevention programmes without consultation).

This year alone the partnership has addressed the needs of people living with HIV through the public health outcomes framework where many HIV and LGB&T organisations like THT, NAT fought for HIV and work around late diagnosis to remain a national priority. The danger if this indicator gets overlooked is that many areas will devalue the work of HIV services, especially in town and rural areas. The partnership has also highlighted the need for improved awareness of client’s rights and how to challenge cuts to services affecting people living with HIV. If you want to know more about the work why not become a stakeholder both as an individual or a group and get to know what is happening around dge your full commitment to the following health and social care. It is open to everyone. an, gay, bisexual and trans people:

B&T Voluntary andemail: Community Organisations.

Join us

nsphobic Bullying in Schools.

NationalLGB&Tpartnership@lgf.org.uk

ervices monitor the Sexual Orientation of their service users.

nisations provide and procure services that are inclusive of

uties within the Equality Act.

bic and Transphobic Hate Crimes and Incidents.

www.baseline-hiv.co.uk 25

CTION AGAINS HOBIC AND T TR IMES AND IN ANSPHOBIC CIDENTS

you can to ensur e that people violence and discri mination as a ation or gender identity, either real you to work with others to take cidents and crime s and ensure that vailable to those who suffer as a

se, batter and kill people each and we love. Over the last few years of the number of hate crimes ature, many of which are still hlight that homo phobia and of our society in England today.

One in five lesbia n and gay peopl experienced a e have homophobic hate crime or incident in the last three years . 75% of lesbian and gay people exper iencing hate crimes or incide nts did not repor t them to the police.

(Source: The Gay British Crime

73% of trans

Survey, Stonewall 2008)

people exper ienced comm ents, threatening behav iour, verbal abuse physical abuse , or sexual abuse while in public spaces.

(Source: The Equalit ies Review – Engendered Penalties, 2007)

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Tackling hate crime is an opportunity people, irrespe for all ctive of their sexual gender identit orientation or y, to join togeth er and speak up the countless for unhea experienced some rd voices of people who have of the most extrem homophobia and transphobia imagin e forms of able.

We want you to ensure that people subjected to bullyin are not g and discrimination a result of their as sexual orientation identity, either or gender real or perceived.

We want you to help inequality of service us call for an end to the the LGB&T comm often receives unity when attempting to report a homophobic or transphobic hate unreported or crime. Left handled poorly , such incidents lead to further can attack can lead to furthe s on an individual which r serious hate crimes against members of LGB&T communities.

politica Commission guidelinlly independent and do not endorse any politica es on political activity. l party. Those membe

rs who are register ed charities

10

Ending Homophobia

Empowering People,

www.lgf.org.uk

2000-2010

CELEBRATING

TEN YEARS

Published in Septem ber 2010 by: The National LGB&T Partne rship, c/o Numb Telephone: 0845 er 5, Richmond 3 30 30 30 Email: Street, Manchester, partnership@lgf.o M1 3HF. rg.uk

So how can you influence your GP practice and the GP consortia?

Join or get a friend to join the patient panels that you will find in many GP practices.

Join your local expert patient’s programme.

. .

Some of the biggest change is that much of what is funded towards HIV services and organisations will be commissioned through local government as ‘public health’ is transferred from the NHS to County, City and London Councils.

To help them be more democratic, new health and well-being boards are being developed. They will help to make many of the decisions affecting our lives. They are supposed to reflect your needs and recognise inequalities and the Equality Act, including race, ethnicity, gender, sexual orientation and disability including HIV. What can you do to influence your local health and social care services and the new powerful local health and well-being boards?

Become a member of your local Link (Local Involvement Network) One of the new ways you can shape and have a greater say in decisions that affect your health and care is to join Link and have a direct route to influence the services you and others receive. Link is getting more

.

26 Summer 2011

HOW YOU AN SUPPORT THE 3.1 MILCLI GAY, BISEXU ON LESBIAN, PEOPLE IN EAL AND TRANS NGLAND

No.1070904

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The National LGB&T Partnership is an England-wid who are comm e group of LGB&T itted to reducing voluntary and health inequalities services. community organ and challenging isations homophobia and transphobia within public The National LGB&T Partnership memb ers have joined actions of Gover forces to influe nment and statut nce positiv ory bodies, in partic ely the policy, people and comm practice and ular the Depar unities across tment of Health England. , for the benefi t of all LGB&T The National LGB&T Partnership will work to ensure kept high on the that health inequ Government’s alities experienced agenda and are expertise within

by LGB&T peopl tackled in a way the LGB&T volun e are that makes best tary and comm use of the exper unity sector. ience and The National LGB&T Partnership will particularly focus engagement throug on developing h the establishme a joined up proce nt of a national LGB&T sector. ss of consultation LGB&T stakeholders and group, giving a direct voice to The Partnership’s the members are

Registered Charity

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and Invest in LGB&T Volun 2. Combat Hom tary and Com ophobic and munity Organis Transphobic ations.

3. Ensure that Bullying in Scho all Public Secto ols. r Services moni 4. Ensure that tor the Sexual Public Secto Orientation of r organisatio their service ns provide and LGB&T peop users. le, fulfilling their procure servi ces that are inclu duties within 5. Take action the Equality Act. sive of against Hom ophobic and Transphobic Hate Crimes and Incidents.

How can you influence or make a difference to the services you receive?WHO WE ARE This can be you as an individual or as a group or a service.

The government is considering how it is giving commissioning responsibilities and budgets to those who are best placed to act as patients’ advocates and support them in their healthcare choices. In the future, most commissioning decisions will be made by consortia of GP practices.

They will take over the commissioning of services as well as provide services.

ose who might be seen as differe nt different, think differently, and have hey want to love.

Lesbians, gay men, get of hatred becau se of who they are

omophobic attack

DID YOU KNO W?

We are asking you to pledge actions to sup your full com mitment to the port lesbian, gay, bisexual following and trans peo ple:

1. Listen, Value

. . .

powerful as the government wants them to become a local ‘HealthWatch’, to act as local consumer champions across not just health but also social care. Many organisations work with link to challenge poor practice or look at improving services for example GUM services, carer’s needs and discrimination.

Become a member of your local Trust Do you receive services from your hospital, or from health services? Why not become a member of your Trust? Get to know what is happening and have a say.

Also many of the services you receive ask for your feedback or even have a forum why not join them?

Use PALS (Patient Advice Liaison Services) to challenge individual issues

They can support you in finding information or challenging individual’s issues, poor services, breaches of confidentiality and service decisions.

They can also provide support and signposting services for you in many health settings.

Above all join the LGB&T National partnership as an individual or a group to find out more.

Sometimes we feel as a single voice powerless but you do have the power to make a difference. www.baseline-hiv.co.uk

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Sun, sea, beer, sex

and Johnny

By Louise Berktay

Sexual

Health

“Keep it wrapped”

Birmingham

www.sexualhealthbirmingham.nhs.uk

This month, Johnny steps back onto the pages of BASELINE in characteristically colourful style, with a reminder from the sexual health team in Birmingham on playing it safe this summer.

When it comes to sexual health, Johnny has just one mission in life: Keeping you safe from infection. Staying safe isn’t only about the usual suspects - chlamydia, gonorrhea, genital warts, it’s also about the big one - HIV. You may have seen him out and about with the sexual health team, helping to promote the messages that often go missed or unnoticed.

“

“

When it comes to sex, ‘keeping it wrapped’ is crucial!

Johnny knows you like a good night out or a trip abroad with your mates, he also knows what happens when the ‘beer goggles’ get in the way. This is why he wants to remind you that, when it comes to sex, ‘keeping it wrapped’ is crucial!

Did you know that anyone, male or female, can be at risk of HIV from unprotected sex? You can’t tell just by looking at someone whether they have HIV and, with 1 in 4 in the UK infected

“

“

One of the biggest rises in new HIV diagnoses has been in heterosexuals

without even knowing, it is possible they won’t even know if they have it themselves.

There are over 85,000 people living with HIV in the UK, this figure has doubled in the last 10 years. You may also be surprised to hear that one of the biggest rises in new diagnoses has been in heterosexuals.

If your beer goggles get clouded on a night out and you forget to ‘wrap it,’ just one accidental encounter could see you become one of the 22,000 people who have HIV and don’t yet know it. Safer sex is the only way to protect yourself and your partner – having a test is the only way to know if you have HIV.

SAVING LI ES Johnny has now joined forces with the Saving Lives campaign, a new national HIV organisation, devoted to raising the awareness and importance of HIV testing nationally.

As well as providing you with key pointers and advice, the campaign is also aimed at clinicians, helping them to recognise the symptoms of HIV and the importance of actively diagnosing patients who have the very earliest signs and symptoms of HIV. Raising awareness and education is key to actively diagnosing new infections.

Knowing when to go for a test and making the diagnosis early is crucial as this saves lives.

Many clinics across the country already believe in what Saving Lives are about, supporting us by displaying posters of Johnny and his words of wisdom on their clinic walls.

You can find out more about the Saving Lives team and their HIV work in the next edition of BASELINE. You can also visit our website www.savinglivesuk.com to find out more about the campaign.

Vaccine Visionary Bows Out

Discovering an HIV/AIDS vaccine is the promised land of HIV prevention. It is a journey that began in 1984 when US federal health officials infamously said: ‘vaccine trials in two years – on the market in three.’ Since then vaccine research has often wandered in the desert.

‘Representations of HIV have ranged from a beach ball with spikes to pogo-ing jellybeans on speed.’

The long-term champion for a vaccine has unquestionably been Seth Berkley, founder of the International AIDS Vaccine Initiative (IAVI) in 1996.

Seth has been the face of vaccine research and made the cover of Newsweek and was one of Time magazine’s ‘100 most influential’.

Now he’s leaving the HIV stage. In June Seth will be moving to the Global Alliance for Vaccine and Immunisation, GAVI. “It’s bittersweet to leave IAVI when AIDS vaccine science is showing more promise than ever. I look forward to the time when HIV will be added to GAVI’s list of available vaccines.

He will be a hard act to follow. Seth Berkley has the ability to wring money out of donors. Starting in 1994 with $124m IAVI funding peaked in 2007 at $900m.

When he recognised that pharmaceutical companies were wary of investing in vaccines Seth 30 Summer 2011

set up IAVI. IAVI is a non-profit venture capital firm, which invests in biotech companies with innovative ideas, then helps them with clinical trials, regulatory approvals and distribution systems. In return IAVI’s partners pledge to sell or license their products simultaneously in rich and poor countries offering break-even prices in the developing world.

Seth Berkley spoke to BASELINE in London about the future of AIDS vaccine research and his personal highs and lows.

Visualising the Virus Before launching into the science I ask him does he ever visualise the virus he has spent so much time trying to unlock? To some people representations of HIV have ranged from a beach ball with spikes to pogo-ing jellybeans on speed.

‘Absolutely I visualise it. It’s very interesting.

The most important part of the virus, from a prevention point of view, is the little spikes that stick out. That’s what the body sees and that’s how it attaches itself. It’s called the ‘trimer’ and it’s made of three different stalks.’

Leaning forward for emphasis he adds, ‘Despite everything we know about HIV, despite 30 years of the epidemic, despite the billions of dollars, we still don’t know what that structure exactly looks like. It’s a really delicate, it breaks apart when you try and look at it.’

In a recent presentation at the TED2010*

Chris O’Connor

Seth Berkley leaves IAVI for GAVI conference IAVI produced a small movie; ‘it’s a beautiful way to visualise it. But the artist got it wrong - he had lots and lots of spikes on the cell - now it turns out that the average virus has 8-10 spikes. That’s important, it’s a lot easier to neutralise that than one with hundreds of spikes.’

It is this neutralisation that is the vaccine bull’s eye. Hitting the spot on the virus that stays still will be key. ‘As many times as the virus changes its clothes, it’s still wearing the same socks. It’s our job to get the body to really hate those socks.’ says Berkley.

New NABs Breathe Life ‘Clearly there are no easy explanations to this stuff,’ says Seth, when asked where the next vaccine developments will come from. But he tries. ‘In the short term we have ‘promising vaccine candidates’, in the medium term ‘improving upon existing vectors’ and long term ‘solving neutralising antibody (Nab) problems.’

Over the last 18 months over 20 new antibodies to HIV have been discovered breathing life into the vaccine initiative.

These new finds are much more potent, up to 100 times more so, than the handful of antibodies used over the previous 15 years. They are also much broader in their protection; some cover 90% of HIV strains.

‘So until recently the world has said we don’t know how to deal with this variability problem.

However for most organisms, and it turns out for HIV, there are parts of the organism that are conserved - they have to be there, and they have to be the same, the part that hooks up with CD4.

These are the socks that don’t get changed.’

This strategy of working backwards compared to traditional vaccine development – ‘retrovaccinology’ – is cutting edge – it has never been done before says Berkley. ‘It is IAVI’s job to help bio-tech companies in that search.’

IAVI has just entered into a joint venture agreement with the THSTI (Translational Health Science and Technology Institute) in India for an HIV Vaccine Design Programme.

The Promised Land ‘What is Seth’s vision of the perfect vaccine?

‘We want the two types of immunity in a vaccine; NABs and cellular immunity’. ‘The antibody is the one that is traditionally more important. But the vision for the vaccine would be two or three strains that block infection which combined, neutralise all of the strains. Also ideally we’d like it to have cellular immunity in case a few strains got through - the body could kill those. Then we would have the perfect vaccine.’

In reality how far away are we from this scenario? ’When I started working on this 17 years ago I had hoped the solution would have occurred by now. We didn’t realise how difficult it really was.’

Many more trials are required, he says. www.baseline-hiv.co.uk 31

Chris O’Connor

Vaccine Visionary Bows Out (cont)

In the next five years, there will be follow up on the RV144 Thai trial, there are going to be two different follow ups; one as a repeat of the original trial probably with higher risk groups using the same set of vaccines to confirm the original results.

‘We will also take similar type vaccines to South Africa and see if it works there’.

See www.IAVI.org for a complete vaccine trials list.

“As many times as the virus changes its clothes, it’s still wearing the same socks.”

The end game strategy, he says, cannot be constantly up-scaling treatment. It has to be to reduce the number of new infections, ‘we believe we need to have a prevention revolution alongside a treatment revolution.’

One of the new prevention tools that enthuses him is the encouraging results from microbicide and more recently PrEP trials. ‘These approaches along with circumcision strategies as well as vaccines, will be a combination we hope is enough to stop the epidemic’, he says. ‘The more you have success the more people are encouraged. They realise that science can deliver. Its no longer a matter of if - it’s a matter of when. We can make better vaccines.’

Taking Stock Despite the renewed optimism there have been 32 Summer 2011

bitter defeats along the way and lessons learnt.’ A particular low point says Berkley was around the STEP trial in 2007, ‘It was very disappointing; a lot of people at that point said, “Where are we going?”

We at IAVI had a sense of where we were headed, but there was a real sense of despair.’

‘The STEP data also showed that people who received the vaccine were at increased risk of infection. That’s something you never want to see as a researcher.’

Vaccine spend is 2% of overall expenditure for HIV/AIDS, he says ‘It’s not a massive amount of money, but if you’re a policy maker, you could say “but it’s long-term, I don’t see the results.” But if governments want to end the epidemic they need to keep this effort on their long-term agenda.’

Berkley compares vaccine development in some way to a whisper, ‘they start with a bang of discovery and then melt into the background, a childhood scar on the arm for smallpox – with vaccines after they are introduced you can barely hear them, that’s the whisper. At the moment we are waiting for the bang.’

(*The annual TED conferences, in Long Beach/ Palm Springs and Edinburgh, bring together the world’s most fascinating thinkers and doers, who are challenged to give the talk of their lives (in 18 minutes or less). TED 2010 Conference film link see blog.ted.com/2010/05/27/hiv_and_flu_the)

www.baseline-hiv.co.uk

You WANT To KEEP QuIET ABouT YouR HIV

let’s talk BODY CHANGES

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

Be Proud this summer Birmingham Pride 28th -29th May 2011 Blackpool Pride 11th -12th June London Pride Festival 17th June - 3rd July 2011 NAT’s fundraiser Spring Awakening on May 11 Enjoy the chance to taste champagne from the 16 Grand Marque Houses on the night. The Champagne Academy has also donated a magnum from each house as a raffle prize. One lucky guest will win 16 magnums of champagne from the top champagne houses in the world.

Tombola prizes include an amazing weatherstation watch from Wempe (valued at £985); two return Virgin flights to New York, champagne afternoon tea for four at London’s Grosvenor House hotel and two tickets to see Liza Minnelli in concert.

Attendees will also have a chance for a private view of the new Modern London exhibition before the party kicks off at 7.30pm.

Book your ticket now: www.spring-awakening.org.uk

The Pink Singers present Razzle Dazzle - an evening celebrating musical icons of the gay community 7.30 pm Saturday 16 July 2011 at Bloomsbury Theatre, 15 Gordon Street, London, WC1H 0AH. Book online at www.pinksingers.co.uk/tickets Interpreted in British Sign Language 34 Spring 2011

Manchester Pride 19th-29th August 2011 Leicester Pride 3rd September 2011

Have you got an event or product you’d like us to promote?

Email: editor@baseline-hiv.co.uk Jane Phillips

Treat yourself or a loved one to a limited edition print

Skipping by Rachel Goodyear from the series Unable To Stop Because They Were Too Close To The Line, 2006 is print from a collection of drawings exhibited at The Royal London, which Goodyear made during a six-month residency with Lime at Fairfield Hospital whilst she was undergoing chemotherapy treatment for Hodgkin’s Lymphoma.

Limited edition of 25, signed and numbered by the artist. Prices range between £75-£125.

Proceeds raised will support Vital Arts and Cancer Research UK. www.vitalarts.org.uk

Body Positive North West and Opt-in drama group (for adults who have experience of mental ill health and emotional distress in Tameside) will explore the idea of love and identity using A view from the Bridge and As you Like it- and their own experiences to create a piece of captivating theatre.

Royal Exchange Theatre June 23 @3pm or June 24 @ 11.30am and 3pm. Call 0161 833 9833.

Are you getting an incapacity benefit assessment?

THT Direct can offer you initial benefits advice and, if you are in need of more in-depth support, refer you on to a local agency or the Citizen’s Advice Bureau. THT Direct is open from 10am to 10pm weekdays and from 12pm till 6pm at weekends. Call 0845 12 21 200. www.baseline-hiv.co.uk 35

home delivery: widens reach...

The HIV drugs bill is rising year on year and the NHS is looking for ways to cut costs while maintaining or improving standards of patient care. Home delivery (HD) has been around for a while – drugs delivered to patients as opposed to collected at clinic pharmacies are exempt from VAT. Home deliveries could save the NHS at least £1000 per year for each eligible patient. Now HD in London is moving closer to the frontline of cost savings targets.

Until now HD take-up by patients has been patchy, at least in the London area – ranging from 15% to 70% according to the London HIV Consortium. They have set ambitious targets for London clinics who must achieve take-up levels of 50%, 60% and 70% over the next three years for all eligible patients.

‘Local Delivery’ To achieve these levels observers agree that there has to be a partnership between clinics, patients and home delivery providers. Eligibility will be decided by clinicians and then discussed with patients. HD will not be suitable for all patients.

General eligibility criteria: Patient has been stable on antiretroviral (ARV) therapy for at least six months Patient attends regularly for appointments Patient can provide a home, work or other postal address where the medicines can be delivered Patient must disclose any medicines that are being prescribed via their GP In addition to a home delivery some HD

. . . .

36 Summer 2011

companies will be happy to deliver to a local post office for collection or to a workplace if preferred.

All deliveries are booked and agreed prior to despatch, using an unmarked or a Royal Mail van with plain boxes/packaging so the driver or anyone else will not know what medications are inside.

‘Using an unmarked van with plain boxes the driver will not know what medications are inside.’

Andy, a patient at the Courtyard Clinic at St George’s Hospital in London explains that all deliveries are made at a time and place agreed in advance. He adds, ‘I feel I’m doing my bit to help the clinic too.’

For some, the marketing of HD services misses the point of deliveries being made to a range of convenient locations – not just the home.

“Home delivery is an unfortunate term”, says Tom Matthews, who attends Birmingham’s Heartlands Hospital, “it can make some people nervous. What it should be called is ‘Local Delivery’ then people would realise they can have their ARVs sent to their local post office or workplace and picked up from there. The term Home Delivery is simply too narrow.”

A number of studies have demonstrated improved outcomes for patients who chose to join a medication home delivery service. The Mortimer Market Centre in London evaluated the safety and effectiveness of a home delivery service for antiretroviral therapy. Of 1,663 patients identified, 450 received home delivery and 1,213 used the clinic-based pharmacy.

Chris O’Connor

At the Mortimer Market Centre they found that patients who received home delivery of antiretroviral therapy had a lower risk of virological failure, fewer outpatient attendances and no increase in adverse events when compared with patients using the clinic-based pharmacy.

In terms of patient satisfaction with a home delivery service, Chelsea & Westminster Hospital sent a multiple-choice survey to 1,000 patients on the HD service. 470 surveys were returned: 83% felt that the HD service had improved how they received their medication, 4% felt it had been more difficult but remained on the programme because of the cost benefit to their hospital and 13% felt there had been neither a hindrance or a benefit to them by using the HD service.

Edging to Self-Management The homecare supplier contracts involve the payment of a service charge by the NHS – the cost of dispensing and delivery vary according to the homecare supplier, although costs can reduce as patient take-up increase. The London Consortium says an annual service cost of £160-£280 for a year’s HD is more than outweighed against annual savings of £1,000 - £1,500 on a typical ARV combination delivered via HD. Claire Foreman, Lead Commissioner for the London Specialised Commissioning Group told a community meeting at the BHIVA Conference in April 2011, ‘I would argue that there have been incentives for HD, but there was wide variety on uptake between clinics. When I spoke to clinicians

it became apparent that some did discuss HD with patients - others did not see it as so important.’

Foreman said the Consortium are still giving financial incentives by returning part of the 20% VAT saving back to clinics to support local administration costs of the HD service.

Nevertheless the 50%, 60% and 70% annual targets are mandatory and funding will be calculated on the assumption that these targets are met.

‘Home/local delivery could become a cornerstone of a radically different HIV clinical experience.’

If uptake reaches the prescribed levels, home/local delivery could become a cornerstone of a radically different HIV clinical experience.

Without the need to come into the clinic for meds - traditionally on a three or four month cycle – if all is stable, appointments with a doctor could become an annual event.

HIV Services Quality and Outcomes Measures (April 2011), a draft consultation paper benchmarks not just clinical markers such as CD4 and viral load but also HD take-up, GP registration, access to health trainers and patient satisfaction - all measured and targets assigned. Patient ‘SelfManagement’ is becoming more than just a buzz phrase.

This article was supported by Healthcare at Home Ltd www.hah.co.uk www.baseline-hiv.co.uk 37

Straight and HIV+?

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Joel Korn

A message of ‘FREEDOM’ Being Jewish I am preparing myself for the eight days of being with my family for Passover.

Each Passover, Jews retell the story of the exodus from Egypt. This is a story of our emergence from slavery and oppression to freedom and liberty.

At this time I think of my own life and what Freedom means to me. I like living in South London. There is a reason why I’ve placed myself far away from my family and where I grew-up; it is so I can be free to bring all the things that give me my unique identity together: my religion; being Jewish, my gayness and living with HIV.

‘We need positive role models who are willing to talk about their HIV status.’

My want or need is to be able to return home one day, with the ability to be able to celebrate my personal freedom, to be myself and celebrate all the differences my family bring to the Passover table. My family have supported me in so many ways; by being there at the most important stages of finding out about my HIV diagnosis and have embraced my being gay to a degree. Living in the Orthodox Jewish community, this isn’t so easy.

At the present time, I choose to live a distance away from them in order that I can be myself and I enjoy the diversity of the community around me. Part of being an adult is having to respect my family’s differences too and the community that they choose to live in. There is still a part of that which feels that we should remember the road that many have travelled to give us our freedom. I also want to help my niece and nephews appreciate the diversity of living in London. I would not want 40 Summer 2011

them to be shunned or have to face any stigma because of the freedom I chose.

My wishes will be seen as selfish by some but my want is only so they can celebrate who their uncle is and the work he does to educate and empower the wider London community. I want to be able to return home and to be validated for who I am and what I do in the world. My friends understand my dichotomy and respect the choices I have made; those friends are like my extended family and I know they will be there for me like my family no matter what.

My own journey of coming out about my sexuality has not been that different to disclosing my HIV status. My path has sorted out the weak friendships from the strong ones – the friends loyal enough to stand by me no matter what. In the workplace I have worked for the HIV sector for over a decade and mostly being out about my HIV status has not presented any issues to me.

I feel that we are in a similar place that we were in with being lesbian or gay fifteen or twenty years ago, we need positive role models who are able and willing to talk about their HIV status so people don’t think HIV has gone away. This will break down the social stigma still alive and strong in the UK and wider world today. www.baseline-hiv.co.uk

Join the conversation @BASELINETWEET

SSUPPORTING olutionS EnablE HopE THE POSITIVE COMMUNITY FOR OVER 18 YEARS • Advocacy • Support Services • Complementary Therapy • Advice • Welfare & Benefit Support • Employment & Training Support

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Baselinetweet BASELINE NHS funding pressures hitting frontline, says A&E chief gu.com/p/2zd7v/tw via @guardian Baselinetweet BASELINE BBC News - Fightback begins over NHS plans http://bbc.in/hZ0TuA Baselinetweet BASELINE Living with Hepatitis C? Complete European Liver Patients Survey on Hepatitis C Treatment online now www.hcv-survey.com

Want to take part in a study about HIV disclosure?

Share your positive or negative experiences.

The research will focus on which questions you have to ask yourself before you disclose to others and how support workers can support people through the disclosure process.

Baselinetweet BASELINE Please retweet: UK Medical Research Council needs HIV negative volunteers for HIV prevention studies www.helpmakehistory.mrc.ac.uk Baselinetweet BASELINE Dental problems delaying the initiation of #interferon therapy for #HCV infected patients http://ht.ly/44bYx #Hepatitis

Sophie is an international student studying for a Social Work degree on placement at Leicestershire AIDS Support Services.

Email: sophie@lass.org.uk or call 0161 255 9995

TM

THT’s Policy Director Lisa Power, MBE talks talking therapies...

There’s no end of fuss, quite rightly, about how important it is that someone with HIV takes the best possible combination therapy, and there’s an increasing amount of attention on preventing poor physical health through long term condition management and self management. But how much attention do we give to mental health and the need to prevent problems like depression?

It’s not surprising that over two thirds of older people with HIV in THT’s ‘50 Plus’ survey said they felt anxiety and depression in the past year.

Years of uncertainty about health, money and relationships can combine with bereavements, social isolation and ongoing stigma to make the odds of poor mental health for someone with HIV far higher than average. And yet it doesn’t need to be that way. Tackling isolation, depression and worries early can prevent future problems.

There’s increasing evidence that “talking therapies” like counselling and groupwork are more helpful than medication in a lot of situations, including reducing depression and anxiety.

ACRIA, the US HIV research project, reports that using these therapies, getting people talking and getting them involved in the community show improved outcomes with older people with HIV who have poor mental health. THT believes we need to campaign to promote and defend “talking therapy” services from the current NHS and local authority cuts. We also need to increase opportunities for people with HIV to get together, support each other and share strategies to prevent poor health of every kind.

Want to have your say on mental health and HIV? Come to www.myhiv.org.uk and join the discussion boards.

42 Summer 2011

Terrence Higgins Trust provides a variety of services for people living with HIV who feel they might benefit from emotional support. We’re currently contracted to provide face-to-face counselling sessions free of charge to people living in the London boroughs of Hammersmith & Fulham, Westminster, and Newham, as well as the whole of south London. All clients are given an initial 50-minute assessment, followed by up to twelve sessions with one of our counsellors.

THT has counsellors trained in a number of different disciplines of psychotherapy and counselling including Integrative Therapy, CBT, Psychodynamic, Humanistic, Existential, and NLP, allowing us to tailor our approach to the individual. They are also highly experienced in dealing with the issues faced by people with HIV, and more widely in the LGBT community.

Those living outside of the areas above can access online counselling via the THT website.

This is a free service for people living with HIV all over the UK, and offers six sessions with a qualified counsellor via instant messaging, video chat, or online audio chat. All sessions are run on THT’s own chat environment, so are completely confidential.

If you would like more information on the different counselling services THT offers, or what services are available in your area, please call our helpline THT Direct on 0845 12 21 200, or email info@tht.org.uk. www.baseline-hiv.co.uk

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i-base Q&A HIV i-base discuss the changes to prescribing of HIV medicines in London What is different this year?

Drug prices are not fixed in the UK. There is a complicated system of negotiating drug prices in each health trust and sometimes at individual hospitals. There is no fixed price – just an extended barter system.

This year the group responsible for HIV services required drug manufacturing companies to submit costs for their HIV drugs for the next two years. This included the option for reduced prices based on bulk use (each company could choose the targets).

Why is this being done?

This is part of an ongoing process to manage the government-imposed restriction on NHS budgets. Over two years the group is faced with having to make savings of £8-10 million from HIV care.

What are the main changes?

The main change is that the first choice treatment will be different this year. The treatment is still very effective and probably just as good.

People on stable NNRTI-based treatment are not being asked to change. Some people using protease inhibitors will be asked to change treatment, but only where there are reasons that this would improve their treatment.

Access to high cost drugs like raltegravir will continue to be used by people who are not able to use other alternatives.

How will this change the options for starting treatment?

If you are starting treatment then efavirenz is 44 Summer 2011

still the preferred first choice. This is a once-daily one pill med. It will be prescribed with two NRTIs in one pill. These are abacavir/3TC, called Kivexa, and is one pill, once-daily.

There are times when efavirenz is not appropriate such as if there is drug resistance, concern for side effects, shift work, pregnancy.

Abacavir will not be used for people with a high viral load (over 100,000) or a high risk of heart disease (a greater than 10% risk over ten years).

If abacavir/3TC is not appropriate tenofovir/FTC (Truvada) is recommended.

When there are clinical reasons not to use any of these drugs, alternatives can be used.

If efavirenz is not appropriate then the switch combination is Kivexa with either atazanavir/ ritonavir or nevirapine (if the CD4 count isn’t too high and there is no cross-resistance).

If you have difficulties with atazanavir, you can use alternative protease inhibitors.

Whilst there are currently no one-pill-once-aday options to start with according to these new guidelines, all of the options available are 2-3 pills once a day. This means that even though this means taking two pills a day instead of one pill, the number of daily doses stays the same. Atazanavir is the PI with the lowest pill count.

These few changes will save the majority of the £8 million over two years.

The number of doses per day rather than the number of pills is more important for adherence.

Whilst one-pill combinations are preferred, there is little data to suggest that two vs one pill per day has a poorer clinical outcome.

If I am currently on treatment will I be asked to change?

People using protease inhibitors (PIs) other than atazanavir may be asked to switch to atazanavir unless there are clinical reasons why this is not recommended such as previous side effects or resistance.

It is only the PIs and not the NRTIs that would be switched.

Answer by: Charlie Walker & Simon Collins People on NNRTI-based combinations will not be asked to switch.

Can I still use Atripla or Truvada if I already use it?

Yes. If you are already taking Atripla or Truvada you do not need to change.

What about if I am already on a more expensive drug like maraviroc or raltegravir?

Raltegravir is being reserved as the drug for people with multi-drug resistance or who are unable to use other combinations.

If you are already on raltegravir of maraviroc for clinical reasons then you should be able to continue taking it.

Can I access these drugs in other ways?

Some research studies include drugs that are not otherwise available. For example, people in the START trial, can use any licensed HIV drug when they start treatment, including raltegravir, Truvada and Atripla.

For more information about START please see this webpage: http://i-base.info/home/start-study Are these changes safe?

All first-line and switch therapies mentioned are safe and currently in use. As before, if you get side effects then contact your clinic. Explain your symptoms to them as soon as possible. There are still as many options to switch to. HIV treatment is also very individual. Treatment will continue to be individualised.

Is this just about saving money?

Cost is the principal reason behind the changes.

Widespread cuts across the NHS include nearly all services. HIV is no different to any other service in this respect. Prescribing the lower cost treatment first when two options are similar will help protect other HIV services. This includes staffing, HIV pharmacy, New-Fill clinics and other services.

If HIV care does not respond by providing the cost-effective treatments, then cuts are more likely to 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

be made in other HIV services: reduced clinic time, fewer doctors and nurses, shorter appointments and reduced monitoring.

I want to use the same meds as my partner HIV treatment is very individual. The most important thing is to find the right combination for you. The two first-line therapies are once-a-day combinations so even if you are not on the same medication as your partner you can still use similar times to take your drugs and ensure neither of you miss a dose.

Can I change clinics?

You are free to change clinics if you choose to but all clinics within London have adopted the same policies so you would have to be prepared to travel to access your health services and meds.

Who was involved in this process?

The tendering process was developed by lead doctors from every London hospital, pharmacists and community advocates.

What happens if clinics ignore the guidelines?

These budget estimates are dependent on reaching projected target volumes for each drug, including maintaining current drugs levels for some existing drugs. In order to reach or maintain these targets over the year, every London clinic will be working to the same guidelines. A clinic can prescribe outside these guidelines if it pays for those drugs. However if a hospital doesn’t broadly follow the guidelines the drug costs for the whole clinic will not be reimbursed by the London HIV Consortium.

How else are clinics trying to save money?

Home delivery of HIV treatment saves the NHS 20% VAT on all treatment costs. If you opt to have your current combinations delivered to you at your choice of location e.g. home, work, local pharmacy then you will be saving money for your clinic. If you are new on treatment then 46 Summer 2011

this money will not be put back into the clinic. If you are already on treatment then a 20% saving with home delivery will be made and will free up money for your clinic to use on other resources.

Home delivery is not for everyone. Clinics have home delivery targets to meet, but if you do not feel comfortable having your meds delivered (to your home, post office or work) then you can continue collecting meds from the clinic.

Where will the saving go?

It is still not clear where these savings will go but with more people each year needing treatment and the NHS facing financial problems, there is a need to find savings somewhere.

How do we know these changes do not risk people’s health?

These changes need to use a transparent process. The outcome must not put patients at clinical risk. So far, luckily, the changes have the potential to improve treatment.

The Commissioners have committed to a safety audit that includes all new patients and all people who switch treatment. After three months this will give a snapshot of whether there are any concerns. Clinical trial data and guidelines suggest all the recommended combinations are effective.

The Commissioners still have to publish this evidence.

If you are worried about you care or think the changes affect your health, i-Base run a treatment phoneline and advocacy service.

Where can I get more information?

The commissioning website has a slide set that summarises the changes: www.londonspecialisedcommissioning.nhs.uk An longer overview of this process is on the i-Base website: http://i-base.info/home/changes-to-hiv-drugprescribing-in-london

Robert Fieldhouse

news: treatment Text Messages May Boost Adherence

A mobile phone text messaging service significantly increased HIV treatment adherence over a six-week period compared with a standard beeper reminder system, according to latest research.

Simply forgetting is the most common reason given for missing HIV treatment doses. US researchers gave mobile phones to a group of people living with HIV. They were able to choose from a range of information feeds including jokes and news updates that would accompany the reminder. A response to the text message was required to say that medication had been taken as prescribed otherwise the device would continue beeping every 15 minutes until the user sent a reply.

Adherence by self-report and pill count increased significantly in the participants who received text messages but not in those who received reminders by beeper.

Alcohol Addiction Drug Tested in HIV ‘Cure’ Study

Research is just beginning in the USA looking at the potential for Antabuse (disulfiram) to flush out the reservoir of HIV that HIV drugs simply don’t reach. Antabuse has been used for years to treat alcoholism and cocaine addiction. HIV hides in what are called ‘long-lived cells’ in the gut and brain and a number of other ‘sanctuary sites.’ Long-lived cells are in a resting state. This makes it hard for the immune system to identify and kill them. Researchers believe that to flush HIV out of resting cells, they need to be activated. Previous research has shown that Antabuse has the ability to activate immune cells. Whether or not it can activate latently infected cells and make them vulnerable to HIV treatment and the immune system remains to be seen. People will take 400 mg of Antabuse once daily alongside their current HIV meds for two weeks and will then be followed up for six months to look for signs of immune activation.

Nobody knows how long someone would have to take such medications to flush out the HIV reservoir.

But if scientists can demonstrate that Antabuse can activate latently infected cells, it could go into wider scale testing in combination with other drugs with the goal of eradicating HIV. Expect results by next Summer.

Summer 2011

www.baseline-hiv.co.uk 47

Statins May Hold AntiInflammatory Promise

Atazanavir Appears Safe for HIV Positive People with Cirrhosis People with HIV who have liver cirrhosis as a result of chronic hepatitis C infection may be able to safely take the HIV protease inhibitor atazanavir without risking a further decline in their liver function.

Atazanavir can cause significant elevations in a liver enzyme called bilirubin, but does not appear to negatively affect the liver in other ways.

Spanish researchers looked at the medical records of 92 people living with both HIV and hepatitis C who had liver cirrhosis. Though atazanavir did cause bilirubin increases these were no greater than those seen in people without liver disease.

Only one person stopped taking atazanavir due to increases in other liver enzymes.

Statins are prescribed when people cannot control their cholesterol through diet and exercise alone. Now new research among people with HIV suggests that Lipitor (atorvastatin) may have a powerful effect on potentially harmful markers of immune activation and inflammation. These have been associated with more rapid HIV disease progression and an increased risk of complications, such as heart disease and stroke.

24 people who were not taking HIV therapy who had blood levels of “bad” LDL cholesterol that warrant statin treatment were randomised to receive either eight weeks of Lipitor (80 mg) or a placebo daily. After a four-to-six-week washout period, in which nobody received any treatment, those originally randomised to Lipitor got the placebo (and those originally randomised to the placebo took Lipitor) for another eight weeks.

Statistically significant reductions in some markers of inflammation and immune activation, such as HLA-DR and CD38, were reported in those receiving Lipitor, compared with those taking the placebo.

Should HIV Positive Organs Be Considered For Transplant?

US researchers have suggested ending the ban on organs from donors with HIV as a way of totally eliminating waiting lists for organs among people living with HIV. The shortage of available organs means that many people with HIV die waiting for an organ from a donor. Doctors in South Africa have already begun transplants between HIVpositive donors and recipients with encouraging results.

48 Summer 2011

Robert Fieldhouse

Vitamin D Helps With Bone Loss Researchers have discovered that taking vitamin D can lower levels of a certain hormone called parathyroid (PTH) hormone that has been associated with an increased rate of bone breakdown among people with HIV taking tenofovir (also found in the combination pills Truvada and Atripla). People with deficient levels of vitamin D have also been shown to have high levels of PTH irrespective of tenofovir treatment.

High levels of PTH permit calcium to be released more readily into the blood and reduce the absorption of phosphate by the kidneys. Both of these situations are bad for bone health.

New HIV App For i-phone

If you can’t live without your i-phone and are living with HIV, a new App may be just what you are looking for to help you stay in control of how you manage your HIV. i-StayHealthy allows you to view charts showing the progression of your CD4 and viral load results. Record the HIV and other meds you are currently taking and programme treatment alerts. Download it at: http://itunes.apple.com/gb/app/istayhealthy/ id422663813?mt=8&ign-mpt=uo%3D

Babies Can Develop Drug Resistance From HIV in Breast Milk

2 out of 3 infants who acquired HIV after birth, who were born to women taking HIV meds, developed resistance to one or more antiretroviral drugs, according to new research. The presence of drug resistance increased over time from 30% at 6 weeks to 67% at 24 weeks after birth.

Web-based HIV Care a Hit In Spain

A group of people living with HIV who opted to receive their HIV-related care via the internet felt their care was comparable to- and possibly superior to face-to-face care. This could offer hope to certain people with HIV who live in rural locations and currently have to travel great distances to a clinic.

83 people with HIV were recruited to the study.

They had stable health and CD4 counts greater than 250 cells per mm3. About half were taking HIV therapy. All had a computer and internet access.

During the first year half of the group got their HIV care, pharmacy consultations, psychological support and appointments with social workers over the internet, while the other half got face-toface care. After one year, the groups switched over.

Patient satisfaction was high and CD4 counts and viral loads-were no different between those receiving care through the virtual hospital and those being seen at the clinic. In total 85 percent reported that the web-based system actually made it easier for them to access HIV care. www.baseline-hiv.co.uk 49

My health has greatly improved and I am greatly thankful for the breakthrough of treatment for people living with HIV/AIDS

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      

   

1

congratulates

3

2

5 1. Dr Tristan Barber for winning the BHIVA best poster prize on lopinavir/ritonavir (Kaletra) resistance

4

2. Dunkan MacLean of George House Trust for creating the wonderful Comforted Creatures animation. See it on YouTube 3. BHIVA community representative Silvia Petretti for organising an unforgettable community dinner in Bournemouth 4. BASELINE’s Tom Matthews for celebrating his 25th HIV birthday 5. The NAM team for organising the packed information forum on changes to HIV services at the University of London Got someone you feel we need to congratulate?

Email david@baseline-hiv.co.uk

GMFA launch new sexual health messaging service At the end of 2008, GMFA, the gay men’s health charity, started thinking about a new service to help gay men just diagnosed with HIV or another sexually transmitted infection (STI) to notify their recent sexual partners, with the aim of reducing the large number of undiagnosed HIV and other sexually transmitted infections in the gay community.

Around the same time, the Elton John AIDS Foundation (EJAF) was looking for innovative projects that harnessed new technology to prevent new infections and support those who are already HIV positive.

‘Many doctors and health advisers are ready to challenge the belief that you can’t do partner notification for HIV. And so are GMFA, EJAF and our partners.’

By October 2009 a three year project to develop a new online partner notification service for gay men was under way, project managed by GMFA, funded by EJAF and with four of the biggest gay dating sites in the UK (Fitlads, Gaydar, Manhunt and Fitlads), around the same table to help develop a service that would benefit their members together with the president of the Society of Sexual Health Advisers, a doctor, a health adviser from 56 Dean Street and a representative from the Department of Health.

The first, critical step of the project was to find out how gay men felt about partner notification – what had been their experiences of it in the past and what they might want from it in the future, especially if they could do it online. The funding from EJAF was dependent on the new service 52 Summer 2011

being acceptable to its potential users.

At the same time we needed to better understand how clinics were carrying out partner notification, so that whatever new service we developed would offer improvements over existing partner notification methods.

When we spoke to GUM clinics we learned that although partner notification is supposed to be suggested to a patient when he or she is diagnosed with an STI, some clinics have such limited resources they struggle to find the time to do it. And in the survey of 3,000 men that we conducted early in 2010 (published in the Journal of HIV Medicine supplement ‘Abstracts of the 17th Annual Conference of the British HIV Association (BHIVA) Bournemouth, UK’), one fifth of respondents who had been diagnosed with an STI in the previous five years, said they had not been advised to notify their recent partners.

We also found that, with a handful of exceptions, if the only contact information a patient has for a partner is his profile name on a dating site, and if the patient isn’t prepared to notify that partner themselves, the clinic can do nothing to help and partner notification simply does not happen.

It was no surprise, but our survey confirmed that many men don’t notify their partners because they are too embarrassed or in some way frightened of their partner’s reaction, but given the opportunity to notify their partners anonymously, they would take it.

Our survey also told us that over 95% of men would want to know if their partner was diagnosed with HIV or another STI, and over 95% of men said they would be willing to tell their partners.

We also learned from conversations with clinics

Dónal Heath

that historically, culturally and understandably, there has been some reluctance to doing partner notification for men diagnosed with HIV. Whether this is because it has been considered too much to expect of a diagnosed patient or too much of a shock for the notified party, it has tended be put on the ‘too hard’ pile. But with arguments in favour of reducing late diagnoses only growing stronger, many doctors and health advisers are ready to challenge the belief that you can’t do partner notification for HIV. And so are GMFA, EJAF and our partners.

Fast forward to April 2011, following months of development, and a few more months of preparation, the six month pilot service of GMFA’s new Sexual Health Messaging Service has just launched in 7 (possibly rising to 8) pilot clinics in London and around England.

Though many complex issues have been factored in to the new service, in particular concerns around confidentiality, privacy and security, the basic idea is pretty simple. A patient or a health adviser acting on the patient’s behalf, after he has been diagnosed with HIV or another STI, can log on to the Sexual Health Messaging Service website, select the infection or infections he has been diagnosed with, enter the contact details of the partners he wishes to www.baseline-hiv.co.uk 53

GMFA launch new sexual health messaging service (cont) notify, decide if he wants any of his messages to be anonymous, and send them.

‘Many men don’t notify their partners because they are too embarrassed.’

Aside from the general convenience of being able to issue notifications efficiently in one fell swoop, the two main advantages of the new service to patients are: 1. They don’t have to worry about what to say.

The message is composed for them and signposts their partners to resources that can help them find a clinic and understand more about the STI they may have been exposed to.

2. They can send their messages anonymously if they want to. Most of the men we surveyed said they would prefer to be told directly, and most of them are more likely to act on a notification if they know who it came from. But we also know that some men simply won’t send any notifications if they can’t do it anonymously.

The two main advantages of the new service to clinics are: 1. If the only contact information a patient has for any given partner is a profile name on a dating site, the clinic can now use that information to reach that partner. For the time being this is limited to the dating app Bender and the dating sites Fitlads, Gaydar, Manhunt and Recon, but the new service has been developed so that other apps and sites, including social networking sites like Facebook, can get on board as soon as they are ready.

2. Improved monitoring and auditing of 54 Summer 2011

partner notification outcomes. In each notification that the system sends to a partner is included a unique reference number. Notifications ask recipients to bring their reference numbers to the clinic with them, and clinics are asked to take reference numbers and enter them into the system to record partner visits. This way we can anonymously monitor and audit the number of notifications delivered by patients and the number of those notifications that resulted in clinic verified attendance by partners.

GMFA is the gay men’s health charity, and as such it is limited by law to developing this service for men who have sex with men, but following the pilot and roll out to other clinics in the UK, with the right partnerships it very well could be expanded, to serve the whole of the community, as well as other territories.

Although only patients diagnosed in one of the pilot clinics will be referred to the Sexual Health Messaging Service during the pilot, partners receiving messages could present at any GUM clinic in the UK. Therefore we are asking every clinic in the UK to keep their eyes and ears open for partners attending their clinic as a result of receiving a notification. If a partner attends a clinic as a result of receiving a notification, we are asking clinics to take the reference number that we sent to him (assuming that he brings it with him to the clinic) and enter it into our system so that his attendance for tests and treatment is clinically verified. Clinics who have not received their instructions for doing this should contact Dónal Heath at donal.heath@gmfa.org.uk In the UK, around 50% of newly diagnosed people with HIV are MSM, who also account for 50% of new diagnoses of syphilis, often associated

Dónal Heath

with HIV infection. With so many undiagnosed infections and the greatly increased likelihood of acquiring and passing on HIV if you have another infection, it is hoped that, by targeting encouragement to test at those who are most at risk of having acquired HIV and other STIs without realising it, GMFA’s Sexual Health Messaging Service could significantly reduce the time between men becoming infected with HIV and other STIs and being diagnosed, and if it does that it could have a major impact on the course of the HIV epidemic.

About GMFA Founded in 1992, GMFA is the UK’s leading charity dedicated to gay men’s health. Its mission is to improve gay men’s health by increasing the control they have over their own lives. The organisation is based on the belief that the best health promotion for gay men comes from gay men themselves. For this reason, it uses the knowledge and ideas of its 170 volunteers, most of them gay men, to design and plan its thoughtprovoking sexual health interventions. These include a range of advertising campaigns, leaflets, postcards and booklets; FS, its health magazine, distributed nationally in gay venues and GU clinics; and national and London-based courses covering sex education, life skills and smoking cessation.

In addition, GMFA creates targeted sexual health interventions for black gay men and HIV positive gay men. Independent surveys have concluded that GMFA’s campaigns reach up to 60% of the London gay population and that the organisation is the most reliable agency at reaching gay men.

The charity also provides accessible information on sexual health and other issues for gay men

through its website at www.gmfa.org.uk Follow GMFA at: • www.facebook.com/gmfa.uk • www.twitter.com/gmfa_uk • www.outspokenonhealth.com For more information about GMFA, please contact: Matthew Hodson Tel: 020 7738 6872 Email: matthew.hodson@gmfa.org.uk

About EJAF The Elton John AIDS Foundation (EJAF) is an international non-profit organisation funding programmes that help to alleviate the physical, emotional and financial hardship of those living with, affected by or at risk of HIV/AIDS. Sir Elton John established the Elton John AIDS Foundation in the UK in 1993 to support innovative HIV prevention programs, efforts to eliminate stigma and discrimination associated with HIV/AIDS, and direct care and support services for people living with HIV/AIDS. Since its inception, EJAF has disbursed over £14.9m to 479 projects in the UK, making it the largest HIV grantmaking charity in the country. EJAF has also funded over 800 programmes across Africa, Asia, and Eastern Europe. For more information about The Elton John AIDS Foundation (Registered Charity No. 1017336) visit www.ejaf.com or contact Anne Aslett, Executive Director, or Simon Prytherch, Fundraising Director, on 207 603 9996. www.baseline-hiv.co.uk 55

Susan Cole

dear susan...

It’s been years since I’ve had a holiday. A friend has offered to take me away this summer. I am getting so stressed about it I feel like I should say no. I’ve heard some countries don’t let positive people in and I am worried about travelling with my meds. What advice do you have?

Someone has offered to take you on holiday and you feel like saying no?! I’d have my bags packed faster than you could say jumbo pack of condoms and slutty sundress. HIV should never be a barrier to holidays, especially of the freebee variety.

There are now very few countries that restrict entry to HIV positive tourists. Even America, former pariah for denying entry to people living with HIV, finally lifted the travel ban last year. You haven’t said where you’re going? Bet it isn’t Papua New Guinea, Equatorial Guinea, Soloman Islands or Sudan? They are some of the very few countries that could deny entry I’ve just discovered. And to be honest, even I would turn down a free holiday to any of those places.

I would recommend travelling with your medication in your hand luggage. No sinister reason, purely because of the bloody inept baggage handlers who seem to have a penchant for sending my suitcase to Turkmenistan instead of Turkey. In the unlikely event you are questioned as to what your medication is for by immigration, saying it’s for “a chronic medical condition” will suffice. You can travel with a letter from your doctor stating this if you’re worried. I would also recommend taking extra medication, who knows when the next volcano in Scandinavia will down planes in Scunthorpe?

Summer 2011

You do need to consider travel insurance. If you are travelling to an EU country you can get free medical treatment if you have an EHIC card.

Most regular travel insurance policies won’t cover you for pre-existing conditions like HIV, but are worthwhile for loss of property or accidents. God knows we Brits on holiday are likely to fall down a flight of concrete steps, dressed as a nun, after 20 pints of Stella (well I am at least.) It’s now also easier than it used to be to get travel insurance that covers HIV. It’s worthwhile shopping around to find the policy that best suits your needs.

‘I’d have my bags packed faster than you could say jumbo pack of condoms and slutty sundress.’

Are you going to a country where vaccinations are recommended? Your HIV status shouldn’t prevent you from having even live vaccines if you have a high enough CD4 count. If you’re staying in a resort you may well not need any vaccinations even in a country where it’s recommended. I must shamefully confess to holidaying in tropical splendour and not seeing much more than the “all you can eat buffet” in my all-inclusive hotel. Not much chance of catching yellow fever that way.

So my advice? Bloody well get your ass abroad!

And don’t forget the condoms, nun’s habit and capacity to down 20 pints of Stella.

Got a question that only Susan can answer?

Email editor@baseline-hiv.co.uk www.baseline-hiv.co.uk

57

David Rowlands

6. Antidote, Turning Point 21 Wardour Street London W1D 6PN Tel: 020 7437 4669 www.antidote-lgbt.com

1. Summit House Support Martin Hill Street Dudley DY2 8RT Tel: 01384 243 220 www.summithousesupport.co.uk

7. The Hepatitis C Trust 27 Crosby Row London SE1 3YD Tel: 020 7089 6220 www.hepctrust.org.uk

2. LGBT Alcohol Support Group HGL, 146 Bromsgrove Street Birmingham B5 6RG Tel: 0121 440 6161 www.lgbtalcoholsupport.org 3. The Brunswick Centre Marten House, Fern Street East St Andrew’s Road Huddersfield HD1 6SB Tel: 01484 46969 www.thebrunswickcentre.org.uk

8. Trade Sexual Health 3rd Floor, 15 Wellington Street Leicester LE1 6HH Tel: 0116 254 1747 www.tradesexualhealth.com 05

4. George House Trust 77 Ardwick Green North Manchester M12 6FX Tel: 0161 274 4499 www.ght.org.uk 5. Waverley Care 3 Mansfield Place Edinburgh EH3 6NB Tel: 0131 558 1425 www.waverleycare.org

04

03 10

01 02

9. GenderShift Ltd The GenderShift Centre 44-46 Portland Street Hull HU2 8JX Tel: 01482 755600 www.gendernetwork.com 09 08

07 06

10. Yorkshire MESMAC PO Box 19 Wakefield WF1 2YE Tel: 01924 211116 www.mesmac.co.uk

This reflects a small number of the valuable groups providing support to people living with HIV. If you can recommend a local HIV or hepatitis support group email: david@baseline-hiv.co.uk 58

Summer 2011

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p l e H

e k a M istory H Give your time and together we could advance the prevention of HIV Sign up now

to join our new network of clinical trial volunteers.

The Medical Research Council has been making history for over 50 years.

To find out more go to

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news: hepatitis Statin improves response to hepatitis C treatment

Quad therapy for hep C produces good results

Telapravir is an HCV protease inhibitor currently being licensed in the USA and Europe. Janssen, the company who has developed the drug put it together with another one of their investigational hepatitis C drugs, VX-222, an HCV non-nucleoside polymerase inhibitor. The drugs were combined with pegylated interferon and ribavirin. None of the participants in the study had taken hepatitis C treatment before.

The study included 106 people who were randomized to receive one of four different treatment courses.

90 percent of those (27/30) who received VX-222 (400 mg) in combination with telaprevir, pegylated interferon and ribavirin had undetectable hepatitis C virus at week 12. This is regarded as a rapid response and is usually associated with a greater chance of curing the virus 24 weeks post the treatment course.

Half (15/30) of those taking the four-drug combo were eligible were eligible to stop all treatment at week 12.

This combination of four drugs has not yet been studied in people living with both HIV and hepatitis C, though studies of telapravir alongside pegylated interferon and ribavirin presented in February this year showed an undetectable HCV viral load in about 70% of HIV positive patients at weeks 4 and 12. A further study in people living with both HIV and hepatitis C is planned this year.

60 Summer 2011

A commonly used drug to lower cholesterol, a statin called fluvastatin, has been shown to have antiviral activity against hepatitis C. When given alongside pegylated interferon and ribavirin it increased the proportion of people achieving a cure 24 weeks post hepatitis treatment to 62% compared with 49.5% among people treated with pegylated interferon and ribavirin plus a fluvastatin placebo.

New hep C tablet looking good

A new tablet treatment for hepatitis C has been shown to cure almost 50% more previously untreated people with the hardest to treat hepatitis C genotype (genotype 1) when added to the current standard treatment (pegylated interferon and ribavirin).

76% of people who took Novartis’ investigational drug alisporivir achieved a cure compared to 55% of people on standard treatment 24 weeks after stopping treatment.

Alisporivir is the first in a new class of drugs called cyclophilin inhibitors. It targets host proteins that the hepatitis C virus uses for replication.

Serious adverse events occurred in 6.9% of people treated with alispirovir and standard care compared to 5.5% of patients treated with standard therapy. Researchers reported a higher rate of bilirubin compared with standard treatment (32.9% versus 1.4%) in the alisporivirtreated group compared to standard treatment but it was largely associated with the first ‘loading’ dose and was short-lived and reversible.

Final data from the study is expected in March 2013.

Robert Fieldhouse

Hepatitis C vaccine; encouraging data

At the International Liver Congress in Berlin researchers presented early data on an HCV vaccine that showed encouraging results in terms of effectiveness and safety.

A therapeutic vaccine was given to a small group of people with hepatitis (genotype 1) who had never taken hepatitis treatment before. The vaccine was given 2 or 14 weeks into a 48-week course of treatment with pegylated interferon and ribavirin. Half the participants had a boost to their HCV-specific immunity. The vaccine did not elevate people’s liver function.

A second study using a similar vaccine evaluated its prophylactic qualities; that is its ability to protect people who are HCV negative from acquiring hepatitis C. In total 27 HCV negative people were given the vaccine. The vaccine enhanced their HCV-specific immunity and the protection was maintained out to 52 weeks post the vaccination.

This is the first occasion the safety and effectiveness has been tested on people with HCV and HCV negative people.

Interferon-Free Combo for hep C on the way



 Data from a very small study (21 people) of two new hepatitis C tablets currently being investigated by Bristol-Myers Squibb has cured 4/11 people of hepatitis C without them taking interferon and ribavirin.

The two developmental drugs produced a greater cure rate when given alongside pegylated interferon and ribavirin; curing all ten people 12 weeks after stopping hepatitis C treatment.

Side-effects of current hepatitis C therapy are often severe enough to cause people to need to take time off of work. Many companies are now developing tablet-based regimens in the hope of avoiding the use of pegylated interferon and ribavirin.

With so many new hepatitis C drugs moving rapidly through clinical trials towards licensing, the hepatitis C drugs market could be worth $15 billion a year by 2019, analysts forecast.

Further trials of the two drugs are planned.

As yet the drugs have not been studied in people living with both HIV and hepatitis C.

Early treatment with peg interferon/ribavirin looks best option

About 65% of people living with HIV and hepatitis C genotype 1 (the hardest to treat strain) who took pegylated interferon and ribavirin therapy for 24 weeks achieved a cure 24 weeks after completing therapy. Among people with HIV and hepatitis C genotypes 2 and 3 (which respond better to treatment) the cure rate was 81%.

Treatment began on average ten weeks after the people had acquired hepatitis C. www.baseline-hiv.co.uk 61

Jane Phillips

news: healthy living Sounds appetising...

De-Stressing

There are plenty of blended roll-on essential oils that you can apply on pulse points at wrists, temple and neck. They contain a combination of oils including organic patchouli oil, organic orange oil, rose and lavender oil, all of which are thought to have calming properties.

Daily relaxation techniques can control and alleviate your stress levels. Ongoing stress places a tremendous strain on your immune system, and this can make you more susceptible to viruses that are doing the rounds. Try deep breathing from your abdomen:

. . . .

Sit comfortably with your back straight. Put one hand on your chest and the other on your stomach.

Breathe in through your nose slowly and equally to a count of 10. The hand on your stomach should rise. The hand on your chest should move just a little.

Exhale through your mouth, pushing out as much air as you can while contracting your abdominal muscles, again slowly to a count of 10. The hand on your stomach should move in as you exhale, but your other hand should only a little.

Continue to breathe in through your nose and out through your mouth. It will take some practise but will have a calming effect and send oxygen to your brain.

62 Summer 2011

1. If you are feeling nauseous try to avoid greasy and spicy food.

2. Try to eat 6 small meals through the day rather than 2 large meals.

3. Take a high-kilojoule nutritional supplement drink between meals (ask at the pharmacy). Or prepare your own high-fortified drinks by adding extra sugar, mashed fruit or cream to full fat milk.

4. Avoid drinking whilst eating as this can cause discomfort and can also increase the feeling of nausea.

5. Sugar, butter or oil can be added to meals to increase energy intake (e.g. add a teaspoon of peanut butter or full fat cream to a bowl of porridge).

Everything stops for tea

More than half the population in Japan drink green tea every day, and women in Japan live the longest in the World. Experts believe that due to its high levels of catechins (powerful disease-fighting antioxidant) tea can destroy abnormal cancer cells and lower cholesterol. Boston researchers found that people who drank five to six cups of black tea each day seemed to get a boost in the part of the immune system that acts as a first-line of defence against infection.

www.baseline-hiv.co.uk

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• Information, Advice & Guidance • HIV & Sexual Health Information • Outreach Services • One to One Support • Support Groups • Volunteering Opportunities • Hate Crime Reporting • Same Sex Domestic Violence Advice • Signposting & Referrals • Training & Consultancy • Youth Services • Condoms & Lube Registered Charity No: 1047375

Tel: 01543 411413 Email: info@staffordshirebuddies.co.uk

Robert Fieldhouse

European-wide study to look at impact of HIV meds on sexual transmission We know that condoms are an effective way of reducing HIV transmission, but they can slip off or break and sometimes people find it difficult to use them consistently.

There is increasingly strong evidence that when levels of HIV are kept very low because of antiretroviral treatment, it also reduces the risk of HIV transmission. There are, however, no precise estimates of these risks at very low, so -called “undetectable�, levels and there is a particular lack of data for men who have sex with men (MSM).

The PARTNER study is an exciting new study in centres throughout Europe, looking to accurately determine the real risk of infection in the new setting of effective treatment. The researchers plan over two years to follow 1650 sero-different partnerships (one partner HIV positive and one HIV negative). The main aim is to study the risk of HIV transmission to HIV negative partners where the HIV positive partner is treatment and also to understand why condoms are not consistently in some partnerships.

Treatment guidelines already present conflicting interpretations of risk and commonly acknowledge the need for accurate data.

This is a study that is actively supported by community organisations who are working for prevention and treatment of HIV. Want to take part?

You can, if you are in a couple where one of you is HIV negative and the other is HIV positive and on treatment.

All information from the study will be anonymised and will be treated in the strictest confidence.

For more information, including a list of participating clinics across Europe see www.partnerstudy.eu or contact Dr Alison Rodger at alison.rodger@ucl.ac.uk or Simon Collins at simon.collins@i-base.org.uk 64 Summer 2011

www.baseline-hiv.co.uk

HIV in numbers Simon Williams of the London Specialised Commissioning Group

London 30,000:

“Every penny we save on the drugs costs is a penny Claire does not have to save from hospital costs.”

the number of people receiving HIV-related treatment and care in London

25,000:

the number of people accessing HIV drugs in London

“As taxpayers it is your NHS, as patients it is your NHS.”

“I will never act as a barrier.

I am not in that game; not into telling Consultants how to prescribe. It is illegal.”

“When a procurement process goes wrong, it is not careerlimiting, it is career-terminating.”

66 Spring 2011

3,000:

the number of people starting HIV treatment each year in London

800:

the number of people starting HIV treatment London commissioners could not cover the cost of treatment for

£170,000 million:

the amount spent on HIV treatment and care in London

£8-10 million:

the amount London needs to save on HIV drugs over the next two years

www.baseline-hiv.co.uk

One name One vision One team

Tibotec has changed its name to Janssen.

On September 10th, 2010, Tibotec, a division of Janssen-Cilag changed its name to Janssen and launched a new identity and a new logo. This change is part of a process to unite all Janssen companies around the world under a common identity. A common identity will allow us to collaborate across companies, to share research and develop innovative ideas, products and services and so support our shared commitment: to work as one team on behalf of patients.

The Janssen name comes from Dr Paul Janssen, who founded one of our earliest pharmaceutical companies. Using his example, we are committed to finding solutions for patients by advancing science and medicine on their behalf.

A heritage of innovation in HIV Janssen-Cilag Ltd TIBO/10-0102 Date or preparation: August 2010

This change does not impact our products or valued relationships with healthcare professionals, people living with HIV, the broader HIV community or other stakeholders. We will continue to conduct our business in the same way. The names of our prescription products will also remain the same.

To find out more about Janssen and the therapeutic advances we are continuing to make in HIV and other infectious diseases, please visit: www.janssen.co.uk

CD4. Know the score.

350

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