BASELINE 14

SPORT: STARS SAVING LIVES STAND: TALL GET SNAPPED SANCTUARY: RETREAT TO COUFFY Autumn 2012: Issue 14

www.baseline-hiv.co.uk

Some breaks from the norm are more welcome than others...

The side-effects of HIV medication can sometimes interrupt your everyday life and leave you feeling not your usual self.

Talk to your doctor today to ensure your HIV treatment is right for you.

Extraordinary efforts for a normal life Š Janssen-Cilag Ltd

UK/HIV/2011/0088

November 2011

In this, our third anniversary issue, we look at the current hot topic in HIV; ageing as well as focusing on the unique challenges faced by women living with HIV in the UK. Tom Matthews questions why World AIDS Day has never focused on gay men.

If you are looking for a place to retreat to in 2013, consider Couffy in France. See inside for more details.

We debut two campaigns; Saving Lives - a campaign to promote HIV testing and Stand Tall Get Snapped, a photographic exhibition documenting the lives of people living with HIV in the UK, which will go a long way to counter stigma and challenge outdated ways of thinking about HIV. Stand Tall Get Snapped, 30 HIV Positive People opens at the Reading Room gallery www.readingroom.com/gallery in Frith Street, Soho, London from 23rd November until 4th January 2013.

The exhibition will travel to the Nexus Art Café http://nexusartcafe.com in Manchester in March and The Virginia Gallery http://thevirginiagallery.co.uk Glasgow in June.

There’s a sneak preview of the campaign in this issue. See http://standtallgetsnapped30hivpeople.tumblr.com to view all the images.

Visit www.worldaidsday.org to find out what’s happening on December 1st where you live. Whatever you are doing, we hope you have time to remember those you may have lost as well as celebrating living with HIV. If you want to stay connected with us, please download our smart phone app, join our Facebook Group BASELINE or sign up for our twitter updates @baselinetweet.

Wishing you all a healthy 2013.

Contact the team: Editor: Robert Fieldhouse robert@baseline-hiv.co.uk Associate Editor: Jane Phillips editor@baseline-hiv.co.uk News Editor: Chris O’Connor chris@baseline-hiv.co.uk

Autumn 2012

Editorial Administrator: Tom Matthews Development Manager & Photographer: David Rowlands david@baseline-hiv.co.uk Proof reader: Michael Duggan Designer: Gareth Williams Intern: Daniel Jon

In this issue 04 bylines 06 letters 08 headline: uk news 12 myline: Joseph Healy 13 headline: global news 16 ageing and HIV 20 always positive 28 NAT feature: discrimination in death 31 NAT’s 25th birthday 32 national HIV testing week 34 hotline 36 myline: Tom Matthews 38 i-base Q and A 40 stand tall get snapped 46 myline: martin jones 47 BASELINE Congratulates 48 headline: treatment news 50 life assurance 52 Kenya: BASELINE report 55 the last session 56 retreat to couffy 60 :headline: hepatitis news 64 lifeline 66 finelines and numbers

For magazine and web advertising please contact david@baseline-hiv.co.uk Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in BASELINE is not to be taken as any indication of health, HIV status or lifestyle.

www.baseline-hiv.co.uk

Deadlines for the next issue Copy 01/02/2013 Advertising 08/02/2013

Robert Fieldhouse has been working and

Chris Morgan is the man behind Compass, the

volunteering in the HIV sector since 1997.

gay financial advisers and Unusual Risks, the HIV financial advisers. He has been at the forefont of HIV financial issues for over a decade and co-wrote the HIV and insurance guidelines that the life assurance industry uses today.

Jane

Phillips spends her time Tweeting, Facebooking and fiddling about with words.

Looking forward to another exciting year growing with BASELINE. CHECK us out on Twitter @ baselinetweet and on Facebook by joining our group BASELINE.

Daniel Jon is studying to be a translator/ intepreter and is helping BASELINE translate the magazine into Romanian.

Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicine. Busily attending medical conferences and scouting for the latest stories.

David Rowlands has extensive copy writing, photography, design and brand development experience across a range of sectors.

Maurice Greenham was diagnosed with HIV in 1984; AIDS in 1994. He’s currently, a hard working Open University student, church organist and serving trustee of several HIV and LGBT organisations and Secretary of the National Long Term Survivors Group.

Martin Jones is an HIV Clinical Nurse Specialist Dr. Joseph Healy is a Disability Activist,

in Eastbourne

Ecosocialist, founding member of Green Left. Chair of the London Ambulance Service Patients Forum.

Simon Collins heads up HIV i-base.

Michael Duggan Ph.D has extensive experience in manufacturing, training, and production.

Schooled in Chemistry, his interests include developments in HIV medication and the long search for the cure.

Autumn 2012

Steve Akehurst is the Policy and Campaigns Officer at NAT.

www.baseline-hiv.co.uk

‘Make your Mark’ at mac

Saturday 1st December www.worldaidsdaybirmingham.org.uk

Email your letter to: editor@baseline-hiv.co.uk Hi Robert I wanted to thank you for the wonderful workshops that you delivered for us. The feedback that we have had has been excellent.

I wondered if you might be up for doing some more training in Jan or Feb next year? I’d really like to perhaps do something around HIV and the brain and managing issues with memory and cognitive function as we have lots of people experiencing this problem. If you can deliver this, I will do some research and see if people would find it useful and be able to attend.

Thanks again Emma Hudson, Intervention, Support and Prevention Worker - Self Care Management, The Brunswick Centre.

Editor responds: Thank you very much for the feedback Emma, much appreciated.

Would definitely be keen to come along in the new year to deliver more workshops. Gilead Sciences developed an education resource HIV and Your Brain. Perhaps I could deliver that?

Best wishes Robert Feedback from JUSTRI Coming of Age Meeting Birmingham 20 September 2012. Dr Mike Youle from London’s Royal Free Hospital and Director of JUSTRI recently delivered a workshop on Ageing and HIV at ABplus in Birmingham. The event was organised by BASELINE. ‘I have been living with HIV for 7 years and it’s great that my voice is finally being heard.’

‘What a great turn out, it’s great to see such a mix of people here tonight.’

‘It’s longer overdue that women were consulted about our care.’

‘This meeting has put a lot of my anxieties aside for living well & long with HIV.’ ‘ABplus should host more events like this.’

‘It was great that HIV has brought us all together.’

‘Can we have another meeting?’

‘I feel I am able to challenge my doctor more now.’

‘It was fab to see different organisations working together.’

Autumn 2012

Dear BASELINE I am missing Susan Cole’s column Dear Susan. What’s happened to her?

Martina James Editor responds: Susan was diagnosed with breast cancer in June this year and has been taking a break from BASELINE until she has completed the course of chemotherapy.

She’s doing fabulously, has a wonderful set of wigs but is giving the high heels a rest for a few months.

Susan is still working, coordinating NAT’s activist network.

If you’d like to join her, sign up by emailing HIVactivist@nat.org.uk The whole BASELINE team wishes Susan a speedy recovery.

We look forward to her return in the New Year.

Dear Robert I just wanted to send a brief note to thank you for your participation in the NHIVNA pre conference Treatment as Prevention study day on Wednesday.

I have to say the event was a huge success and I am still receiving feedback from the delegates as to the quality of presentations for what clearly was an appropriate and interesting topic. The final evaluation was also positive with presentations scoring an average of 5/5. Well done.

Kind Regards Sylvia Alfred, Associate Manager, Medical Science, Gilead Sciences Limited www.baseline-hiv.co.uk

SEE YOUR FAVOURITE SHOWS AS YOU’VE nEVER SEEn THEm bEFORE ORDER ONLINE

mAdTRUST.ORg.Uk

BY PHONE

020 7240 8206 LImITEd EdITIOn ORdER TOdAY And HELP mAkE A dIFFEREnCE Uniting the entertainment industry and its audiences to offer support, help and hope to people living with HIV, AIDS and other long-term chronic illnesses.

For more InFormAtIon VISIt oUr new webSIte madtrust.org.uk the make a dIFFereNCe trust @madtrust

news: UK NAT Auction Artwork to Celebrate 25th Anniversary

2012 marks the 25th anniversary of NAT and as part of their birthday celebrations they are auctioning off 30 pieces of original artwork donated by high profile supporters such as Gok Wan, Dr Christian Jessen, artists including Maggi Hambling, Bill Pryde and Robert Taylor, and

Positiveline Closes as Founder Retires After 15 years of running the Eddie Surman Trust, Founder Peter Shapcott is set to retire.

Positiveline ceased to operate from 28th September although the number will remain active for the next six months.

When The Eddie Surman Trust was founded in 1996 it was unique in that all of its volunteers were HIV positive. The Trust offered help and support to people who felt they could not cope following an HIV diagnosis.

Over the last two years 90% of all calls made to The Trust are from mobile phones.

Being a freephone helpline mobile phone callers have been being charged as is The Trust and with telephone bills reaching £500 per quarter, Shapcott said this is “no longer viable.”

Peter Shapcott told BASELINE, “I 08

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Autumn 2012

Chris O’Connor

Virgin Care Examined

designers such as Paul Smith, Matthew Williamson, Philip Treacy and Giles Deacon, each artwork has been created using the iconic red ribbon, the international symbol for HIV awareness and support, as its central motif.

The online auction will run from 30 October until 7 December 2012.

To bid: http://tinyurl.com/c6h69tu

took a long time to make this decision but decided that it was not practical to keep the line operating. It is becoming more and more difficult to raise funds at a time of great financial hardship for many people.”

However, The Trust now has a Facebook page which is updated daily with HIV news from around the world and a mobile contact number for anyone wanting help or support. Peter Shapcott told BASELINE that “enquiries from Facebook are already higher than the helpline and there is no cost to the trust at all.”

For the past 15 years Peter along with a small team of dedicated volunteers has answered the helpline every day of the year.

The Trust will continue as The Eddie Surman Trust & Positive Online and will continue to run The Midmonth Group, in London, a social support group for HIV positive gay men. www.baseline-hiv.co.uk

Virgin Care’s move into managing sexual health services is increasingly in the spotlight. Channel Four’s ‘Dispatches’ programme looked at claims that Virgin Care were reducing access at one of its GP health centres and had problems with a Chlamydia screening programme in Teesside. According to a statement by Virgin Care, ‘Channel 4’s report fails to make clear that many of the services taken on by Virgin Care were significantly under performing when they were taken on.’

Virgin Care’s latest large contract is for sexual health services in Surrey including, for the first time, GUM and HIV care, for a population of over one million. BASELINE understands that Virgin is not operating the Payment by Results (PbR) scheme in GUM clinics and that staffing costs at clinics are being reduced.

According to the Department of Health, ‘Payment by Results (PbR) is the transparent rules-based payment system in England under which commissioners pay healthcare providers for each patient seen or treated, taking into account the complexity of the patient’s healthcare needs. PbR promotes efficiency, supports patient choice and increasingly incentivises best practice models of care’ says the NHS. A Virgin Care spokesman, Russell Elliott, told BASELINE that the decision not to have PbR was, ‘a ‘commissioners decision - we didn’t have a choice,’ He confirmed that the contract at the moment was ‘on a block’ with a specified costs and returns for the five year contract.

A government target that all GUM services in England are operated on a PbR by 2014, could see a change of contract conditions but this was outside the terms of their contract, he said. The Virgin contract will run to 2017. In April 2013 new commissioning groups will begin contracting health services.

As to staffing levels being reduced, Elliott of Virgin Care said that in Surrey, ‘they are appropriate for the care we provide, we have had nobody leave so nobody has had to be replaced.’

Dr Steve Taylor, a sexual health and HIV specialist from Birmingham Heartlands Hospital and Dan Hartland from the HIV awareness charity Saving Lives warned there were unique issues in allowing private companies run sexual healthcare.

See: www.bbc.co.uk/news/health-19991579 ++++

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Robert Fieldhouse

news: UK Sport Starts Support Saving Lives Campaign

River House Board Changes

Chelsea and Westminster Hospital’s Dr. Mark Nelson recently joined the Board of Trustees at West London HIV Charity River House’s. Dr. Nelson told BASELINE; “HIV continues to be a major issue for individuals living in the UK. It hasn’t gone away and we need to ensure those living with this infection are able to continue their brave fight against the disease. Organisations such as River House continue to lead the way in empowering individuals to do so”.

Professor Matthew Weait, Birkbeck College, who became a Trustee of River House in June, said, “I am very excited about taking up my role as a member of the Board and Treasurer at River House. River House is unique, and it is a privilege to be associated with its work.”

Dr. Christopher Scott also recently joined River House. Dr. Scott told BASELINE; “I am delighted to have become a Trustee and I very much look forward to working with River House to help it continue to provide much needed services for its users.” Dean Nicholson, Priory Hospital Roehampton, who joined the Board earlier this year, said, “It has been an honour to be nominated to the River House Board and I will take great pride in ensuring that it continues to work to provide the services needed in a changing world.”

River House Chair, Viv Whittingham, Service User Representative, Alain Labouere, and the staff team welcome their new colleagues.

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Five powerful figures are striding towards you – a hulking American footballer towers above a lithe, blonde long-distance runner, whilst a star striker stands shoulder-to-shoulder with an Amazonian swimmer. Above their heads zooms the simple legend ‘Saving Lives’. These are heroes on a mission.

The deliberate riff on the recent Avengers Assemble movie is the brainchild of Dr. Steve Taylor, HIV Consultant at Birmingham Heartlands Hospital and Director of Saving Lives, a national HIV charity that aims to eliminate the stigma which still dissuades many from taking an HIV test.

“The only reason to die of HIV in the UK today is late diagnosis,” he insists, emphasising that treatment has come a long way since the dark days of the 1980s. “Back then, the only thing a national awareness campaign could say is, ‘Don’t die of ignorance’. Now, we can say awareness will set you free – treatment offers a long and full life.”

From Olympic runner Hannah England, to Aston Villa’s goal-scorer Darren Bent, the campaign has attracted high-profile sporting ambassadors. The aim is to make HIV mainstream using positive imagery - whilst emphasising the crucial importance of testing.

The ambassadors will appear in the ‘campaign in a box’ developed by the charity, which asks organisations to donate to the charity by sponsoring billboards featuring the stars. Donors’ logos will be added to the posters.

“HIV tests save lives,” reiterates Dr. Taylor, echoing the campaign’s motto. “Our ambassadors have assembled to make exactly that point – and anyone sponsoring one of these billboards can be a hero, too.” +++-

Autumn 2012

Joseph Healy

Reconfiguring HIV services in London – A wolf in sheep’s clothing?

I went along to my clinic, the Bloomsbury, at Mortimer Market Centre in central London recently to hear speakers from a variety of organisations explain what the new HIV services in London in the aftermath of the Health & Social Care Act would mean to people living with HIV and to attempt to set our minds at rest. I went along with a relatively open mind, though very suspicious about what the changes could mean.

‘There’s a need for HIV activists and representatives to “get outside the HIV box.”’

The first speaker was Yusef Azad, Policy and Campaigns Director from the National AIDS Trust. He emphasised how much of the service provision would continue seamlessly. He pointed out a number of very significant changes. Firstly, he mentioned that sexual health clinics would be commissioned by local authorities. Yusef warned that funding for ‘HIV/AIDS’ services would no longer be ring fenced. He questioned whether local authorities would commission all sexual aspects of health – PEP, Community HIV prevention etc?

His view was that to a large extent this would be dependent on the involvement of people with HIV in local Health & Wellbeing Boards which would be drawing up Joint Strategic Needs Assessment and a Joint Health & Wellbeing Strategy.

The NHS Commissioner put a very positive spin on things advising patients to see “a glass half full” rather than “half empty”. She also emphasised the importance of empowered patients but I felt that a lot of what she said was just the hard sell.

The speaker I most warmed to and who I felt 12

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was treating us like adults was Professor Jane Anderson, Chair of the British HIV Association (BHIVA). She presented the bright side as being the unmasking of a new layer of pathologies as the HIV positive population ages and the real possibility of long-term virological control. She also stressed the need for people living with HIV to become involved in bodies such as the Health & Wellbeing Boards and local Healthwatch, the successor organisations to LINks, which are starting up next April. Jane felt that organisations such as National Voices and the Patients Association had been very open to hearing the concerns of both clinicians and patients in the HIV sector and she felt strongly that there’s a need for HIV activists and representatives to “get outside the HIV box”.

She expressed her fears that some services currently financed by primary care trusts, such as peer support could disappear. Jane was the only speaker who specifically dealt with the elephant in the room; the risks posed by privatisation of NHS services as well as the impact of cuts.

I came away from this meeting with rather mixed emotions. How realistic is it that large numbers of HIV positive people will become involved in some of these new bodies? After all, what has been our long-term experience of consultations? I also felt strongly a push by both the NHS bureaucracy and the more ‘corporate’ AIDS charities to put a positive spin on some of the developments which could potentially be disastrous for those living with HIV. But then, as a member of Queers against the Cuts, I would think that wouldn’t I? http://queersagainstthecuts.wordpress.com +++-

Autumn 2012

Chris O’Connor

news: global

Quad Pill US Pricing Announced The new Gilead HIV antiretroviral combination pill brand name, Stribild which contains the HIV drugs elvitegravir, cobicistat, emtricitabine and tenofovir, has been priced at $28,500 (£18,000) in the USA. The combination tablet was approved for use in the USA on 27th August by the US Food and Drug Administration. To put the price in context, Stribild is 36% more expensive than the current gold standard combination pill Atripla (also manufactured by Gilead, in partnership with BMS).

Thirteen Democratic representatives had asked the drug’s manufacturer Gilead to set a more affordable price. In an August 1st letter the representatives had said that setting a price above $27,000 would present problems for the AIDS Drug Assistance programme (ADAP), ‘…. leaving less funding available for ADAP and thousands of our most vulnerable constituents untreated.’ Gilead has a patient assistance programme, which includes the new AIDS drug.

A similar wholesale price across European countries for Stribild would see the new medicine out of the reach of most European patients.

The Quad table is expected to be licensed in the EU in the first quarter of 2013. www.baseline-hiv.co.uk

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Tanzania: Multivitamin trial halted

High-dose multivitamins do not slow HIV disease progression or reduce risk of death when added to HIV therapy, but may contribute to liver toxicity, according to a study conducted in Tanzania.

Taking high doses of a multivitamin supplement did not decrease HIV progression or reduce death rates in people taking antiretroviral therapy in Tanzania.

A study published in the October 17 issue of the Journal of American Medical Association (JAMA) said that the group receiving high doses of multivitamin supplements appeared to increase the likelihood of participants developing liver inflammation.

The trial randomised 3418 people living with HIV, initiating HIV treatment to take high-dose versus standard-dose (recommended dietary allowance) daily oral multivitamin supplements containing vitamin B complex, vitamin C, and vitamin E. The study was halted after 15 months when it became clear that the high dose vitamins were leading to an increased likelihood of elevated alanine transaminase (ALT) – an enzyme that suggests liver inflammation.

The high dose supplements had no significant effect on CD4 cell counts or HIV viral load.

Sheila Isanaka of the Harvard School of Public Health (HSPH) said in a press release, “this study provides no clear evidence of a benefit of highdose micronutrient supplementation compared to standard-dose supplementation in adults receiving HAART, but it highlights the need for further research on how micronutrient supplements can be better positioned alongside antiretroviral drugs to reduce morbidity and mortality due to HIV.” ++

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Chris O’Connor

news: global Abbott Donate $1 Million in Sandy Support Abbott and its foundation, the Abbott Fund have provided $1 million in funding and product donations to support relief efforts in response to Hurricane Sandy. Abbott’s product donations including adult and paediatric nutritional products and rehydration solutions were provided to food banks and free clinics across the east coast.

Activists Demand ‘show us the money’

Hundreds of AIDS activists marched through Harare, Zimbabwe demanding to know where a tax specifically for raising funds for HIV treatments has been spent. Activists say that it has not been spent on anti-retrovirals, as the country remains unable to meet the needs of people living with HIV for life-sustaining drugs.

The marchers descended on the country’s National AIDS Council offices that manage the funds raised from a three percent tax levied on all workers in Zimbabwe. In 1999, Zimbabwe became the first country in Africa to introduce a tax specifically for the treatment of HIV, but now activists say the funds are not coming through.

In an interview with a local news outlet, AIDS Council director Tapiwa Magure said the levy is not being abused. “We are up to date with our audits. There are tight controls. All I am saying is, we are more than ready to explain everything,” said Tapiwa. The activist group Zimbabwe Lawyers for Human Rights has petitioned the National AIDS Council demanding that the agency release information related to how the AIDS levy is being administered.

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Generics Push at Opening Door in Asia

Indonesia is over riding the patents on a number of HIV drugs. A presidential decree implemented the measures to ‘meet the urgent need for anti-viral and anti-retroviral treatments.’The government will allow the local production of generic versions of seven HIV - and hepatitis B drugs under a ‘compulsory license’.

There are an estimated 310,000 people living with HIV in Indonesia. Under World Trade Organisation rules, countries can take steps to bypass patents when there is a public health crisis.

However this has been a little used option until now. In 2007 the government in Thailand issued a compulsory licence for HIV drug Kaletra.

However the Indonesian move might be the precursor of more generic licensing as earlier this year the Indian government took the Indian patent away from Bayer for one of its cancer drugs, Sorafenib Tosylate.

The move brought the price of the patented drug down from over US$5,500 per month to $175 per month; a price reduction of 97 percent. Natco, the generic manufacturer who were granted the licence, is paying a six percent royalty to Bayer on sales.

“This decision once again affirms that courts can and should act in the interest of public health in the case of pharmaceutical products,” said Leena Menghaney, of Médecins Sans Frontieres Access Campaign.

“The high prices caused by patents in India are a growing problem that needs to be grappled with: one year’s treatment costs over US$1,700 for one of the newer HIV medicines we use in our project in Mumbai, and will be needed across the developing world. This price needs to come down, and we hope that the routine use of compulsory licensing may be one way of making this happen.” ++

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Autumn 2012

A SeRvice Of

WO RL D A iD S DAY S AT U R DAY 1 D e c e M b e R 2 012 S t p a u l’ S ( t h e a c t o r S ’ ) c h u r c h coVent garden 11 a m

Followed by the planting oF a tree oF rememberance in the church garden F O R M O R E I N F O R M AT I O N V I S I T M A D T R U S T. O R G . U K The Make A Difference Trust is registered in England and Wales as a charitable company limited by guarantee Company No 6546586 Charity Registration No 1124014 Registered Office First Floor, 28 Denmark Street, London WC2H 8NJ Tel 0207 240 8206

Ageing with HIV ‘Something We Never Expected.’

Article commissioned by Janssen

30 years ago nobody would have imagined that people living with HIV would live healthy lives through to old age. The advent of effective treatments 15 years ago changed all that and we can now celebrate the fact that people living with HIV are ageing.

But the complications associated with ageing are increasingly being seen as the number one problem in HIV today.

University College Dublin’s Dr. Paddy Mallon questions whether it’s accelerated ageing or accentuated ageing he’s seeing among his patients. ‘We are probably going to see more cancer and more heart attacks, more fractures, but we have little evidence to suggest this is the case at the moment.’

As we age the cells of our immune system reach a point where they can no longer divide.

If you are HIV positive your immune cells have likely been working overdrive to fight HIV so they may reach this end point far sooner, causing inflammation and this contributes to all kinds of age-related diseases. Dr. Mallon told BASELINE, ‘The HIV immune system bears resemblance to the ageing immune system.’

At 62 years of age Ben Collins has lived with HIV for more than 30 years. He told BASELINE, ‘I got tested early along with my work mates.

Early and frequent testing was considered “good manners” and good public health. I got involved as a volunteer. I was a clinical trial subject. I worked in an HIV advocacy organisation. I started treating early. I got LOTS AND LOTS of therapy to deal with stress and my underlying destructive tendencies and self-stigmatization. I’ve been in a strong loving relationship for over 20 years. I take my pills 16

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regularly. I see my doctor as advised. I am very active.’

Ben does not doubt that HIV puts him at risk of accelerated ageing but says ‘it’s hard for me to sort what’s HIV, what’s ageing.’

Rising HIV in the over 50s HIV is often mistakenly seen as something that predominantly affects younger people. But in the UK HIV is fast rising in the over 50s- in people postdivorce, re-engaging with casual sex, with limited knowledge of HIV or other sexually transmitted infections. Simply put they are people who have a poor understanding of their risk and don’t use condoms.

Medics often fail see these people as ‘likely candidates’ for HIV who have presented to their GP time and time again with symptoms suggestive of HIV but leave without a diagnosis. The fact is that around half of older people diagnosed between 2000 and 2007 acquired HIV at age 50 or older.

New HIV diagnoses more than doubled among the over 50s between 2000 and 2007 in England, Wales and Northern Ireland from 299 cases to 710 cases. In 2010, the figure had topped 850 cases, making up 8 per cent of the total new diagnoses.

Being older increases the chance of being diagnosed late. In Ireland around half of the 320 people diagnosed last year were diagnosed late, (with a CD4 cell count less than 350) but it rose to 65 per cent among people over 50 years of age.

The increase in the proportion of older people living with HIV requiring complex care will be a challenge to the health care system in coming years.

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Autumn 2012

Robert Fieldhouse

Who is best placed to provide medical services to older people with HIV? Speaking recently at the British HIV Association Conference in London, Dr. Paddy Mallon told delegates, ‘We cannot rely on PCTs or GPs to know what is right for our patients. We must retain that power to provide better outcomes for our patients.’

But it’s likely that many of us will need to use primary care more and more to manage the complications of living long-term with a chronic disease, whether that’s for a statin prescription or blood pressure medication. Many HIV positive people we spoke to report feeling more confident in doing this than they had in the past, but others remain reluctant to disclose their status.

More problems sooner?

As people living with HIV age we are likely to be increasingly, some would say disproportionately, affected by chronic illnesses such as heart disease and stroke, high blood pressure, diabetes, kidney disease and liver disease, low bone mineral density as well as cognitive decline and a number of cancers.

Some studies suggest these problems are occurring earlier among people living with HIV. Problems that are usually seen in 60 or 70 year olds are being seen in 40 or 50 year olds with HIV. Michael Snaith, an ‘elite controller,’ told BASELINE, ‘I am now 30 years into diagnosis. I tend to say now that I am suffering from agerelated problems and not HIV-related problems.

Getting old and living with HIV is becoming more of a strain to my health and well-being. Examples, irritable bowel syndrome, long-term depression, pains in my legs and often sleep disorders, just to www.baseline-hiv.co.uk

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Ben Collins name a few.’

Around 60 per cent of HIV positive men in their 40s have osteoporosis or its pre-condition osteopenia – a condition usually not diagnosed in men until their 80s.

People with HIV are also at high risk of chronic lung disease, depression and frailty and there’s now some evidence that people with HIV with high blood pressure are at an increased risk of heart attack compared with HIV negative people.

Dr. Mallon told BASELINE, ‘the data show that the MI (myocardial infarction, or heart attack) event rate was higher in HIV positive versus HIV negative people for a given blood pressure, which suggests that, although rates of hypertension may not be higher in HIV positive people, the consequences of hypertension in terms of risk of MI may be greater among people with HIV compared with HIV negative people.’

So why all these complications when we know that HIV medicines are effective? The problem is that despite effective HIV treatment, our bodies remain in an inflammatory state, with our organs facing continuous damage. If you are a smoker or are living with chronic hepatitis B or C too the inflammation appears to get worse.

Depression is a particular problem for older people living with HIV. Speaking at the recent Washington AIDS conference, Stephen Karpiak of the AIDS Community Research Initiative of America said that a 2005 survey of older positive people in New York found that 50 per cent reported

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depression; ‘it’s the single most important cause of non-adherence to all medicines, including HIV medication’, he told delegates.

Forgetfulness or inability to concentrate can make daily living and importantly, sticking with medicines, a challenge. Amy told BASELINE, ‘The fact that we have to work until we are 67 is frightening. How are we supposed to do that, especially if the job is physically demanding and there is rent and bills to pay? It’s really worrying me.’

Unemployment among older people has increased rapidly since the beginning of the recession. Since 2008, the number of unemployed people aged 50 to 64 has risen by 53 per cent and the proportion of older people who are unemployed for over a year has risen from 33.2 per cent to 44.5 per cent.

Finding suitable employment can be an even greater challenge if you are living with HIV and have been out of the job market for some time. But returning to work or study can reap other benefits aside from financial - feeling more integrated into a social network; if you’re not ready for that step yet, find out if your local HIV organisation is looking for volunteers - it’s a great way to meet other people with HIV.

Peter Noble, a long-term HIV survivor told us, ‘It’s a bummer when you’ve seen friends and lovers die, and you realise you going to be a retired person living with HIV and God forbid we get dementia and forget we have it. Let’s just enjoy old age and behave accordingly....bad.’

We know that HIV treatment works just as well for older people, who often report better treatment adherence, so do keep taking the tablets.

‘Disease mongering’ is not helpful according to Dr. Mallon; ‘we’ll know more as people living with HIV age.’ Ben Collins is clear that it’s important to stay informed; ‘If you’ve got a problem or a question get help. Denial is silly. Get involved.’

Hope for the future Last year Italian researchers suggested that a poor diet and illicit drug use are also possible causes of premature ageing, proposing the wider use of anti-inflammatory drugs such as aspirin and statins as possible treatments. The same researchers felt that early HIV treatment in older positive people could help to delay ageing.

Enjoying life and taking good care of yourself; eating well, getting enough sleep, exercising, stopping smoking and reducing alcohol consumption can all contribute to helping you feel well.

AGEhiv cohort study Amsterdam

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This article was commissioned and sponsored by JanssenCilag Limited (Janssen). The views expressed are those of the author. Janssen is one of the world’s leading research based pharmaceutical companies with a heritage of innovation in HIV. The company seeks to be an innovative and socially responsible participant in the response to HIV/AIDS in order to save and improve the lives of those living with HIV and prevent the further spread of the virus.

Want to find out more?

Coming of Age – available at www.justri.org JAIDS Supplement on HIV and Ageing http://journals.lw w.com/jaids/ Fulltext/2012/07011/HIV_and_Aging___State_ of_Knowledge_and_Areas_of.1.aspx www.grayingofaids.org http://agrayingpandemic.tumblr.com/ http://journals.lw w.com/jaids/ Fulltext/2012/07011/HIV_and_Aging___State_ of_Knowledge_and_Areas_of.1.aspx w w w. g m h c . o r g / f i l e s / e d i t o r / f i l e / a _ p a _ aging10_emb2.pdf

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Women with HIV in the UK ‘Invisible And Ignored?’

Article commissioned by Janssen

Every minute of every day a young woman somewhere in the world acquires HIV. In the UK more than 25,000 women are diagnosed HIV positive and thousands more women are living with the virus but do not know it.

Women, particularly those aged 50 or more or those who don’t fit the usual sterotype of someone who is at risk of HIV are more likely to be diagnosed late, posing a short-term high risk to their health.

Globally HIV remains the leading cause of death for women aged 15-49 years of age.

BASELINE spoke with three openly HIV positive women living in the UK. Phoebe told us, ‘What really helped me come to terms with things was meeting other women living with HIV, who were healthy and leading fulfilling lives.’

Phoebe told us, ‘I initially found the diagnosis very hard, particularly as I was told by the doctor (who evidently knew little about HIV) that I only had about seven years to live. With two small children that was devastating news.’

‘But to be honest, HIV hasn’t prevented me from doing anything; I’ve got married and had two more children since I was diagnosed and have continued to work.’

We also spoke with Positively UK’s Deputy CEO Silvia Petretti who co-ordinates Pozfem, a network of women living with HIV in the UK and Angela, the co-ordinator of Alba, a network of women with HIV in Scotland to learn about the current challenges facing women with HIV in the UK today.

Silvia Petretti gave us her view on the challenges 20

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women face today; ‘In spite of the fact that women make up over 35 per cent of people with HIV in the UK and that we face unique challenges biologically (our bodies change enormously throughout puberty/pregnancy/menopause) and socially (we are still a long way from being equal to men), it puzzles me that internationally gender inequality and gender issues seem to be essential to the response to HIV, however this gets totally ignored in the UK.’ ‘Gender Based Violence (GBV) is one of the great challenges women living with HIV face in the UK. International research has shown that GBV is both the cause and the consequence of having HIV. But this has been rarely acknowledged in the UK. A recent study of 190 women with HIV seen at the Homerton University Hospital showed the extent to which women in the UK are experiencing violence, with 52 per cent having experienced violence in their lifetime.’

Phoebe agrees; ‘some women face domestic abuse because of their status and find it hard to leave abusive relationships.’

But GBV can occur outside the home too; in healthcare settings for example which may fail to recognize or respond to the needs of women.

Silvia is keen we acknowledge that it can take the form of ‘verbal abuse, coercion and controlling behaviour,’ and that support services be developed to reflect this.

Phoebe’s experience of discrimination in the

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Robert Fieldhouse healthcare setting has been mixed. ‘I’ve been very lucky with my HIV Consultant, who has gotten involved with other health professionals involved in my care. I know other women living with HIV may experience problems with the NHS outside of their HIV clinic. Other health professionals desperately need to be educated about HIV.’ Do HIV treatments work as well for women?

Since the early days of HIV treatments many women were anxious about the effects the new medicines may have on them and whether or not they would work as well for them as they did in men. This anxiety was understandable since HIV clinical trials rarely include more than a minority of women, making gender comparisons difficult.

Biological differences between women and men - such as weight and fat distribution, and how men and women metabolise medicines - may mean that women receive higher blood levels of medication than men for the same daily dose.

Some HIV drugs have been shown to reduce the effectiveness of HRT (oestrogen and progesterone), and oestrogen can also cause decreased levels of some HIV medicines resulting in the risk of HIV viral rebound and the development of drug resistance.

Silvia Petretti says, ‘Researchers need to do a lot more to ensure that more women living with HIV are involved in designing trials and that sufficient numbers are enrolled.’

What’s certain is that there is a need for more studies to answer many of the unanswered questions in this area and it is always best to discuss any issue you are worried about with your doctor.

It took time, but it is now clear that HIV treatments work as well for women as they do men, perhaps sometimes better, with a quicker time to reach undetectable and often greater CD4 cell rises.

Recently research in South Africa found that women are likely to survive longer on HIV meds www.baseline-hiv.co.uk

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Silvia Petretti than men, but explained the finding in terms of women’s overall greater life expectancy compared with men rather than anything particular about the women’s ability to live with HIV. Pregnancy and motherhood As treatment guidelines have shifted to recommend an earlier start to therapy in the last five years, now more than ever, women diagnosed during pregnancy who start therapy at that time are likely to stick with the drugs following delivery of their baby. It’s important for a woman taking HIV medicines during pregnancy that she is prescribed drugs that she finds easy to tolerate and are safe for the baby.

Phoebe told BASELINE, ‘The chance of a woman living with HIV transmitting HIV to her baby if she’s on treatment is less than 1 per cent, but many women worry about this. Bottle-feeding can be problematic for some women who feel that other people may question them as to why they’re not breast feeding. Bottle-feeding can be expensive.

Women living with HIV who can’t afford it should be given help from their council with the cost of bottle-feeding and not risk exposing their baby to HIV.’ Women face specific challenges as they age Bone loss is well known outside of the world of HIV to predominantly affect post-menopausal women. Introduce HIV and it’s likely to occur at younger age- whether the cause is HIV or some ++

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of the medicines used to treat it, is uncertain right now- there’s a suggestion both may play a role.

The onset of menopause can be associated with an increased risk of heart disease and stroke, high cholesterol, diabetes and osteopenia and osteoporosis.

Scotland: the Alba Network North of the border Scotland’s premier HIV charity Waverley Care co-ordinates both the ISIS weekly support group for women and the national network of women living with HIV in Scotland, Alba. Alba runs an online discussion forum for women across Scotland to connect with each other and share information and experience.

Angela is Alba’s co-ordinator and told BASELINE, ‘currently there are about 40 women signed up to Alba but there’s also a large number who’ve used elements of the service and moved on once they’ve received what they’ve needed.’

We were interested to know the challenges women living with HIV in Scotland face today.

Angela told us ‘disclosure within intimate relationships seems to be the biggest disclosure challenge, the availability of services for women who are geographically isolated and the tendency for women to be passive recipients of care due to lack of confidence remain significant challenges.’

Women living with HIV are dispersed across Scotland. Angela sees this as an opportunity for the network; ‘One of the main benefits of such a network is the opportunity women have to connect with one another and share information whilst being able to remain anonymous if they wish.’

NHS services for women living with HIV vary dramatically across Scotland. ‘Women still face discrimination within the NHS so the education and information staff receive around attitudes towards people living with HIV desperately needs to be improved.’

Phoebe also shares concerns about the future; ‘I am very concerned about changes to the NHS 22

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and how they will affect women living with HIV. I’m afraid that the push to “localism” will mean that councils won’t have the understanding or experience of HIV and services will suffer or be cut.’

Silvia Petretti is facing a challenging time with Pozfem; ‘I think one of the greatest challenges is the lack of investment and funding. The new NHS mantra is ‘No Decision About Me Without Me’. However they expect all this involvement to happen spontaneously. It is very difficult for many of us women living life with HIV, who are often marginalized on other grounds, because we are poor, black, or have been drug users etc. to have the confidence and the skills to participate in decision making.’

‘It took me over six years of being involved with Positively Women, and nine years of being HIV positive, to come out and live openly with HIV. This would have not have happened without the high quality peer support and incredible role models of other women living with HIV I had. To conclude: If we want involvement we need investment.’

This article was commissioned and sponsored by JanssenCilag Limited (Janssen). The views expressed are those of the author. Janssen is one of the world’s leading research based pharmaceutical companies with a heritage of innovation in HIV. The company seeks to be an innovative and socially responsible participant in the response to HIV/AIDS in order to save and improve the lives of those living with HIV and prevent the further spread of the virus. PHGB/HIV/1012/0506a November 2012

Networks Ffena www.ahpn.org/ffena Pozfem www.poz-fem-uk.org Network Alba www.waverleycare.org WECARE+ www.womeneurope.net Global Coalition on Women and AIDS www.womenandaids.net/ The International Community of Women with HIV/AIDS www.icwglobal.org/en

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Always Positive ‘HIV is Not a Secret, it’s a Responsibility’

Two inspiring young women share their stories with BASELINE Like many young people Keyria-Nei, 19, plans to go to university. She’d like to study psychotherapy/counseling or perhaps social work.

Keyria-Nei was 12 when she found out she was HIV positive. ‘I had been on medication for about 3 years before I was told I am HIV positive. HIV is something that I have and take meds for and that’s fine.’

But it hasn’t always been that way.

‘When I was 14 I remember I went to a CHIVA (Children’s HIV Association) residential – that is when it started to hit me. I realised, “this is actually a big deal” From the other stories I heard I began to question things; that questioning became anger.

‘I don’t hate my mum for it but I definitely took it out on her.’ My mum took the decision to wait until I was 12 to tell me. She thought that I was too young to understand. It was a good thing that me and my nurse had a good relationship. She noticed when things began going wrong.’

I wanted Keyria-Nei’s opinion on when kids with HIV should be told they are positive. ‘It’s probably best for parents to start communicating with kids from 7 or 8 about HIV. Bring it into conversation, talk about cancer too, so it is not such a shock.’

‘When I got to 13 or 14 my meds got changed twice. I got frustrated taking the tablets. I have changed so many times due to side effects and resistances. ‘The thing I find difficult is the concept 24

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of having to depend on them.’

‘I am healthy but get ill from time to time. I was in a relationship with someone when I was 15 – everything was fine, but we split up .We are still close. He was cool with my HIV status. To be honest, I was relieved to tell him. Last year at the CHIVA summer camp I met my fiancé. I’d like to be able to have a family and provide for them.’

‘HIV is just something that I have and take meds for and that’s fine.’ Keyria-Nei Keyria-Nei is concentrating on getting her English, Drama and Health and Social Care A’ levels. ‘I am in a better routine now with taking my meds but doing coursework I sometimes don’t finish working until 3am – then I realise I haven’t taken my meds.

At the same time she’s taking a leading role in the CHIVA youth committee, which has grown ‘from 4 people a few years ago there are now 11 of us. Lots of young people want a say in how they are treated by doctors.’

Chante is 17. She has ambitions to work as a lobbyist with government to raise awareness of HIV among young people. Right now she’s at college studying A’ level politics, law and sociology. Next she hopes to get a degree in political sociology.

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‘I was 13 when I was told I was HIV positive. Maybe that was too old because I could have now accomplished so much more if I had known earlier. I have achieved so much in the last four years; imagine what I could have done if I had known earlier.’

Chante’s accomplishments are not insignificant. Like Keyria-Nei she sits on the CHIVA Youth Committee and is the Chair of the Youth Committee for Faith in People with HIV, a support organisation based in Leicester.

She recently helped with the design of www.pozitude.co.uk, a tool to help other teenagers with HIV understand things about HIV; legal stuff, who to get in contact with if they have questions. It challenges myths.

She’s seen firsthand the difference the website can make; ‘a friend came to me when she was going out with a boy. He had told her he was www.baseline-hiv.co.uk

www.pozitude.co.uk A safe site for 11 to 19 year olds who are HIV positive . ..….want to know how we felt? ..….need answers to questions?

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..….help stay positive about your journey ahead!

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positive. He said he did not want to put her at risk.

He basically used it as an excuse to break up with her. She was hysterical and was started telling me all these myths.’

‘The nurse can sometimes ask all the questions for you, when all you want is a bit of independence.’

Chante

‘I told her to go and visit the website we had developed. I waited a few days for her to cool off before telling her I was HIV positive too. I sat her down and said, “I know it scares you but there is nothing to worry about. You haven’t done anything wrong. I told her, “Yeah I’ve got the same thing.” Since she had done her research on the POZITUDE website she was fine with it.’

Chante has been taking HIV treatment since she was 6 or 7 years old. ‘I used to always take it because my mum would give it me. I never questioned because I was such a young child but when I went to senior school I stopped taking it because I felt fine. I did not see any physical disability - at that age I was not told of my status. I felt that it was a waste of my time taking medication when I could just be the same as everyone else in my school.’

‘Because of that I have struggled taking medication as I’ve got older. It becomes a burden at times.’

As part of the Faith in People with HIV youth group Chante contributed to the development of a smart phone application iDiary Meds. She explains to me how it works; ‘you put in your medicine, how many milligrams you have to take and at what time. It then sends you a reminder.

You can lock it with a pin code. You have to tick a box when you have taken your meds so it monitors 26

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how you are taking the pills. It helps to organise you; and it’s available across all smartphones.‘ Chante’s volunteering keeps her busy. ‘I am on the CHIVA youth committee. I went to the summer camp this year and am just back from the British HIV Association conference in London where CHIVA hosted a parallel session.

‘We role-played scenes about transitioning from pediatric to adult care to show how we are sometimes treated by the pediatric nurse when we go to adult care and demonstrated how we would prefer to be treated. The nurse can over-shadow you because they have known you for such a long time and sometimes ask all the questions for you when you just want a bit of independence.’

‘It was a bit eye opening for many of the doctors. When you are in pediatric care they see you as their child. They have to protect you from a lot of things, when you are in adult services it has to be different, they have to stop spoon-feeding you.

What message does she have for other young people living with HIV? ‘Don’t keep asking yourself questions like, “why me, why do I have this?”’

‘Taking your meds on time each day is really important because there are not many combinations you can take. It becomes more difficult when you get resistance.’

‘Being part of CHIVA is a unique opportunity that I would not have got if I were not positive. Not many young people get to do all of those things.’

‘I think HIV only affects my life in a positive way. The great things I have done knowing that I am positive outweigh the bad things. Instead of HIV being a struggle for me it is now a success.’

This article was funded by Abbott with no editorial control or input.

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BASELINE Magazine at your fingertips Supported by

Available now

HIV stigma in the funeral and pathology services In the climactic final scenes of Tony Kushner’s Angels in America - set in the midst of the AIDS crisis - Prior Walter, the central character, addresses the audience: ‘This disease will be the end of many of us, but not nearly all. And the dead will be commemorated, and we'll struggle on with the living, and we are not going away. We won't die secret deaths anymore. The world only spins forward. We will be citizens. The time has come.’

‘That even in death some people are not being treated with the basic respect, dignity and equality they deserve, simply because of their HIV status, is horrifying.’

His words remind us how, during the early years of the epidemic, the deaths of so many from HIV were profoundly traumatic. A focus for discrimination and stigma, but also 'reclaimed' by activists as a source of empowerment and mobilisation, changing the face of the epidemic as a result.

With the arrival of effective anti-retroviral therapy, deaths from HIV or AIDS are now thankfully rare in countries like the UK where treatment is available. But in the end we all die, if only from old age, and we want that process to be as easy and dignified as possible for ourselves and for those who we love.

With so much progress in both treatment and rights in the UK over the last 30 years, you would have thought the deaths of people with HIV would no longer be an occasion for discrimination or a cause for activism. But at NAT we have been 28

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saddened and angered to find out that this is far from being the case.

NAT has come across a number of examples of ignorance and prejudice in the funeral industry and pathology services which are causing totally unnecessary distress for family and loved ones, at an already upsetting time in their lives.

The most common experience concerns the process of embalming. A routine, if specialist, procedure, embalming includes the removal of blood from the body in exchange for a solution of water and formaldehyde, and temporarily preserves the body to make it suitable for public viewing at a funeral. Upon learning of an individual’s HIV status, however, many funeral directors are refusing to perform embalming – citing the risk of transmission to staff.

‘My partner died at our wonderful local hospice in 2010’, writes one person to NAT, ‘and I had to set about dealing with his plans for his funeral.

However, within a short time of his death I was informed by the funeral directors that, because he had died from AIDS they would be unable to embalm his body, so if I wished to view him in their chapel of rest, this should be done sooner rather than later’.

‘I was shocked and dismayed, especially as it prevented some family and friends from travelling down to pay their last respects…Although I have started to come to terms with his untimely death, the refusal over the embalming issue still upsets and moves me very deeply’.

Another person explains, ‘A friend died a few years ago and…we were initially told that it wouldn’t be possible for there to be a viewing of his body in an open coffin. The reason given was ++

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that as he had HIV the workers would not be able to get the body in a suitable state to be displayed.’

It takes no more than a basic knowledge of HIV to know that such restrictions are totally unnecessary. Universal precautions (the basic practice of avoiding contact with bodily fluids by means of the wearing medical gloves etc) are designed to protect all staff from the risk of infection – regardless of whether someone’s health status is known. In addition, not only does HIV cease to be active in the body a short while after death, but an individual diagnosed with HIV and on treatment at the time of death, whose status the funeral director is aware of, presents far less risk than someone with undiagnosed HIV – of whose status staff would be none the wiser.

Sadly, this discriminatory practice is not confined to a few ill-informed funeral directors - it is rooted in official national guidance, still operating today. Health and Safety Executive (HSE) guidance – ‘Controlling the risk of infection at work from human remains’ – clearly states that embalming should not be carried out on those with HIV. Some more informed funeral directors choose to ignore this advice, but unfortunately many abide by it.

For some of those writing to NAT, the subject evokes painful memories. ‘My partner died in 1993.

We could not have him embalmed. We cleaned him and dressed him ourselves. He was taken away in a black bag and we were not allowed to see him again. I know it’s a long time ago but still it did hurt and still does today’.

Yet, unfortunately, such practice has not been consigned to the past. Discrimination around embalming still seems to underpin a whole array www.baseline-hiv.co.uk

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of further prejudice and stigma in some parts of the industry. Some are still refusing to even perform basic hygienic preparations on the body, such as washing or dressing. Others are insisting that the body is placed in a sealed bag.

NAT has come across examples of ignorance and prejudice in the funeral industry which are causing totally unnecessary distress for family and loved ones.’

‘Sadly, my partner died in 2008’, recounts one individual. ‘The only [good] funeral director I found was based over 60 miles from our home. Most of the others contacted (around 10 companies) stated they would deal with the body, but the body would have to be placed in a sealed bag. They gave me a list of do’s and don’ts. The coffin can only be seen at the chapel; they cannot arrange the coffin (even closed) to come home prior to the funeral due to ‘hygiene issues’. It would have to be sealed at the hospital, and the body could only be dressed in a shroud – the company said they could not take the risk by ‘messing about’ trying to clothe the body in normal clothes…I felt extremely angry and frustrated that this should happen 25 years down the line.’

Little of this practice has any evidence base whatsoever. Even current HSE guidance says basic hygienic preparations can be undertaken as normal. Part of the problem lies with industry bodies. In the course of our research on this issue, NAT has found leading funeral director organisations disseminating wildly out of date, inappropriate advice to their members.

While the guidance is far better within the pathology profession, stigma and discrimination continue to exist on the ground in that service too.

Some HIV workers across the UK have told NAT 30

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that in some towns or regions, post-mortems will be refused for individuals with HIV. Although this is rare, it is deeply distressing for those involved – often partners or family will not be able to learn of the cause of their loved one’s death.

Good practice exists among funeral directors and pathologists, of course. However, pockets of both professions clearly need bringing up to date.

That’s why NAT will be pushing hard on this in the coming months. Following our representations, the HSE are set to hold a consultation in the very near future reviewing their guidance for funeral directors. Once the consultation is announced we would urge BASELINE readers to get involved with this, and join NAT in making the case to remove advice discouraging embalming of HIV positive individuals.

In the meantime, training and awareness obviously remain vital. We will be disseminating information and ‘myth busting’ among both funeral directors and pathologists via a briefing document. We hope that this can be used by readers and others as a source of information, and shared with their local funeral service. Onthe-ground training provided by clinicians and community organisations has also proved extremely effective, and needs funding.

That even in death some people are not being treated with the basic respect, dignity and equality they deserve, simply because of their HIV status, is horrifying. It’s a stark reminder should anyone need it of the challenges still facing people with HIV in the UK today. Despite all the progress, it also underlines the importance of continuing to campaign; that the world in fact doesn’t ‘only spin forward’ - sometimes it gets stuck, and needs a shove from organised and informed communities.

In that spirit, I hope BASELINE readers will join NAT and others in giving the funeral and pathology industries the push they require.

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NAT Celebrate 25th Birthday with Launch of ‘Shadow’ HIV Strategy at the House of Lords Despite the immense progress made in tackling the UK’s HIV epidemic over the last thirty years, huge challenges remain. By the end of this year it is estimated that 100,000 people will be living with HIV in the UK. Annual HIV diagnoses remain stubbornly high and a quarter of people with HIV are unaware of their virus.

Despite this situation, there is no Government strategy for tackling HIV in England. The last national strategy for sexual health and HIV came to an end two years ago and England is the only nation within the UK not to have a strategy – despite over 90% of people with HIV in the UK living in England.

To address this worrying gap, NAT has produced its own ‘shadow’ strategy, ‘HIV- a strategy for success’ which clearly sets out the areas where there is a need for strategic leadership if we are to effectively address HIV as a sexual health issue, a long term condition and an equality issue.

NAT launched the report at their 25th birthday Parliamentary Reception on Tuesday 16 October at the House of Lords. www.baseline-hiv.co.uk

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Top Image: Actor Mathew Bose, Liberal Democrat Brian Paddick, Dr. Christian Jessen and photographer Robert ?

Above: Dame Denise Black (Founder and Chair of NAT) Baroness Jay (NAT’s first Chief Executive, Baroness D’Souza (Lord Speaker) Deborah Jack, (Chief Executive of NAT) Below: BASELINE Editor Robert Fieldhouse and NAT’s activists network Co-ordinator Susan Cole

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Robert Fieldhouse

National HIV Testing Week begins 23rd November Rapid HIV Testing Key Tool in Initiative to Diagnose the Undiagnosed Until a decade ago HIV testing in the UK remained largely confined to sexual health clinics in hospitals. This limited access to testing has contributed to a situation where up to a quarter of the 100,000 people with HIV today are unaware of their infection and nearly half of the newly diagnosed are diagnosed at a late stage, after the point where treatment should have started.

Whilst the UK health agencies have, for several years, been highlighting the need to make testing more accessible, it is only since the introduction of rapid HIV tests that this has become achievable.

HIV testing can now be performed in a broad range of settings, making it easier, quicker and more convenient for people to take a test.

Despite the availability of rapid tests, the move to providing HIV testing in the wider NHS community has been slow to take off. Although the British HIV Association (BHIVA) guidelines state that HIV testing should be offered to all new GP registrants and people presenting at Accident and Emergency Departments, the number of HIV tests performed at GP surgeries remains low.

Jason Warriner, Clinical Director for Terrence Higgins Trust (THT) commented; ‘If you have a GP or a practice nurse who is interested in HIV or sexual health, HIV testing tends to grow and thrive. However, there’s still a reluctance by GP’s to provide the service, with anxiety about where to refer people if they are found to be positive.”

There are also concerns about money and the lack of financial incentives for GPs to test has proven to be a huge stumbling block.

Encouragingly, research recently carried out in London shows that training can double the rate of testing in GP surgeries.

The lack of provision by GP’s and the fact that not everyone is registered with or entitled to GP care, led charities such as THT to ‘fill the gap’ by 32

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providing community-based HIV testing services.

THT first began offering rapid HIV testing nine years ago to “trigger a move away from people going to hospitals and sexual health services for testing and, by making it more acceptable to people and more accessible, ‘normalising’ and ‘demedicalising’ it.” THT now has 20 testing centres across England and Wales performing 3,000 HIV tests each year and has plans to open a new testing clinic in Scotland during National HIV Testing Week.

Jason Warriner told BASELINE; “Rapid HIV testing has removed some of the stigma around HIV testing. The test is minimally invasive - just a drop of blood from the fingertip – and you get the results then and there. If people have to go to a hospital they build it up psychologically into something serious - clinicians have done a wonderful job at complicating and mystifying HIV testing! THT is delivering rapid HIV testing in saunas, faith groups and churches and learning centres - places where we can do behaviour change work.”

The personal, public health and financial benefits to being diagnosed are clear; “If someone can be diagnosed early, before they become unwell, we can avoid them being admitted to hospital acutely ill and reduce their dependence on health services,” Jason advised. “Getting people tested and onto treatment reduces transmission and if we stop people acquiring HIV they are not going to need HIV treatment and care.”

As people living with HIV, we should champion HIV testing among our untested friends. Do you bit during National HIV Testing Week and talk to your friends about the benefits of knowing your status.

This article was sponsored by Alere, who also support National HIV Testing Week 23 November – 30 November 2012.

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Optimising HIV diagnosis and management Our aim at Alere is to improve the diagnosis and management of people with HIV by delivering critical lab quality results in the clinic or community.

Š 2012 Alere. All rights reserved. All trademarks referenced are trademarks of their respective owners.

REF020-SH-010/02/12 SC

alere.co.uk

Robert Fieldhouse

Want to know what’s happening on World AIDS Day in your area?

Visit: www.worldaidsday.org

Positively Red presents Make your Mark (a personalised patchwork project) for WAD 2012, a series of events to commemorate World AIDS Day 2012 based at mac, Cannon Hill Park.

‘Make your Mark’ is a community-focused project that anyone can get involved in for World AIDS Day. In the same way that the AIDS Memorial Quilt (The Names Project) has enabled individuals to create a panel for a life lost to HIV & AIDS. The Birmingham based ‘Make your Mark’ project will enable groups/organisations/ schools/colleges/youth clubs/church groups and 34

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individuals to create a fabric panel to mark, ‘What World AIDS Day means to you in 2012’ using the themes Reflection, Education and Celebration.

3 workshops at mac at the following times: • Saturday 17th November – 1pm to 4pm • Saturday 24th November – 1pm to 4pm and • Saturday 1st December – 1pm to 4pm Further information can be obtained at www.worldaidsdaybirmingham.org.uk or by calling Garry Jones WAD Co-ordinator on 07743075673

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Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk

A SeRvice Of

WO RL D A iD S DAY S AT U R DAY 1 D e c e M b e R 2 012 S t p a u l’ S ( t h e a c t o r S ’ ) c h u r c h

World AIDS Day – 1 December 2012 London MAD Trust: A West End Christmas coVent garden The Make a Difference Trust is holding a Now enjoying its 9th year, A West End Christmas 1 1 a service m of Dedication and Celebration at St Paul’s is the perfect way for starting the season of goodwill. Each year, TheatreMAD presents this (The Actor’s) Church in Covent Garden on World concert at St Paul’s (The Actors’) Church, in Covent AIDS Day. The short service will begin at 11am Garden, where West End casts, soloists and with readings by actors Simon Callow and Harriet celebrities join enthusiastic audiences to herald in Thorpe.

This service be followed by the planting of a Christmas with style, fun and festive cheer.

Sunday 2 December 2012 Time: 7.30 pm (Doors ‘Remembrance Tree’ in the gardens and a private viewing of the photograpic exhibition “Stand Tall, Open: 7:00 pm) Tickets cost £30. Get your tickets online at Get Snapped: 30 HIV Positive People” by Edo Zollo up the road at the Reading Room in Soho. www.madtrust.org.uk Jump for World AIDS Day Positive East is always on the lookout for people wanting to raise money to support people living with HIV and are now offering the opportunity to take part Followed by the planting oF a in a free skydive. This tWorld AIDS Day is no ree oF rememberance in the church garden different. If you’re a daredevil who wants F Omake R M OaRdifference, E I N F O R M AT I O N V I S I T M A D T R U S T. O R G . U K to fly from 10,000ft and then sign up for your veryThe own free skydive Make A Difference Trust is registered in England and Wales as a charitable company limited by guarantee Company No 6546586 Charity Registration No 1124014 Registered Office First Floor, 28 Denmark Street, London WC2H 8NJ Tel 0207 240 8206 today!

Simply send your details to: skydive@ positiveeast.org.uk and the team will contact you about the arrangements. www.baseline-hiv.co.uk

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How is it possible that...........

Gay men have never been officially recognised by the Global AIDS Programme as a theme for a World AIDS Day? In the early to mid 1980’s when HIV was beginning to be detected (if not yet called HIV), gay men were still adjusting to a changing social identity. In England and Wales sexual relationships between men (21 years old and above) had only been partially decriminalised since 1967 and many gay men were facing the situation of how open we should be about that. We were still aware of the horror stories of sons being evicted from family homes. We read stories of young men being beaten, sometimes to death, and left on city centre pavements simply for being gay. There seemed to be little public concern about these events. We then had Section 28 to contend with.

HIV led to the situation shifting again; we were now facing the deaths of our friends in the most horrific circumstances. We had to make a decision about what we were prepared to do about it. Many of us became involved in the formation of HIV support groups across the country to deliver care to people who would not receive it from anywhere else. This was in addition to the care and support we were providing to our immediate friends. These groups were based on a self-help model, with the members “owning” their groups.

The first communities to be notably affected

by HIV in the UK were gay men, people living with haemophilia and injecting drug users. People living with HIV and haemophilia were seen to be the innocents, whilst gay men were seen to have “brought it on themselves”. There were some in society who even expressed the view that the 36

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virus was doing society a service in causing the deaths of thousands of gay men. It took years for some communities living with HIV, to use local HIV groups created by gay men. What might that say about their own sexual identity?

In 1985 five gay men established Body Positive in London and shortly after another group did the same thing in Brighton and then in 1986, gay men also established Body Positive Groups in Manchester and Leeds.

This model of self-help is based on the concept of the individual, not only accepting their HIV status but being actively involved in their own care. The infection and illnesses were new to the NHS. This resulted in a period of time when it would be true to say some patients had greater knowledge of their condition than their doctor.

This enthusiastic involvement in their care by gay men pioneered the concept of the empowered patient, which eventually the NHS recognised as being of significant value to both the service as well as the individual.

For several years the red top tabloids filled their front pages with horror stories designed to inflame public opinion against people living with HIV. They weren’t concerned that they continued to make scientifically inaccurate statements. In areas where people with HIV were thought to be living, walls were covered in graffiti and property frequently vandalised. As a community, we had little reason to think that the institutions of the state would support us. The police for example, were still flagrantly carrying out homophobic raids on private houses and gay men were still facing

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Autumn 2012

Tom Matthews

prison sentences.

There was a sense that the world was going mad.

‘Gay men were seen to have “brought it on themselves.”’

Then along came Jonathan Grimshaw – what an inspiration he was. His calm tone, deep voice and extensive vocabulary were exactly what we needed to hear. I can remember the surprise and delight when I first saw him on TV – yes, they were interviewing an openly gay man on national television about AIDS !

I think that recognition also needs to be given, not only to the tens of thousands of gay men who died with HIV, but also to the thousands who worked as doctors, nurses, social workers teachers, lectures, trainers, administrators and care assistants. Many of these were also providing care in their own time, to partners or friends who were ill.

In the mid ‘90’s as the spread of HIV started to affect other communities in the UK more numerously e.g. black and minority ethnic groups and women, we tried to promote the services our groups could offer to them. We also made efforts to ensure that our groups were comfortable places for individuals from these communities to be.

Eventually working links with local haemophilia societies were established and we started to develop a sense of a community of people who were living with HIV. It didn’t matter how the individual became infected or what their gender, sexuality or ethnicity was, it was our community; www.baseline-hiv.co.uk

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we were people living with HIV. Though globally heterosexual transmission has always been the major route of transmission and in recent years the same has been true in “developed” western societies too, yet it is still commonly called the “Gay Disease”.

The time at which HIV arrived in our communities was also the time that gay men were facing the issue of how/if, we should come together. What would be our identity and what kind of community would we like to be ? An impossible task but after what were experiencing anything seemed possible. The whole process was however overwhelmed by the horrific cycle of sudden illness and hospital visits which were inevitably followed by death. I never imagined that we could experience so much pain and sadness. Looking back I think we can be proud of the challenge we presented to this epidemic and the manner in which we celebrated that response.

Over the last 25 years the theme of World AIDS Day has encompassed – youth, women, family: children, young people and men. There has been no mention of gay men specifically.

During those same years, I think that we have provided a powerful and effective new model for challenging life-threatening conditions and have made a major case for recognition of the roles we have played in helping individuals and communities develop new ways to live and die with HIV. The theme for this year’s World AIDS Day is “Getting to zero: zero new infections. Zero discrimination. Zero AIDS-related deaths.” ++

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37

What is a CD4 cell?

CD4 cells are a type of white blood cell that are an important part of your immune system. They are sometimes called CD4 T cells or T helper cells.

What do CD4 cells do?

The immune system includes two main responses. CD4 cells send signals to other immune cells including CD8 “killer” T cells, which then come to destroy the virus. CD4 cells are called helper cells because they help this process. CD8 cells are called killer cells because they finish the process.

How do CD4 cells relate to HIV? CD4 cells are also the cells that HIV uses to replicate. This is why HIV is such a tricky virus.

Although the body thinks it is fighting the infection by producing CD4 cells, it is really helping the virus.

The body responds by making even more cells to fight the virus, but HIV hijacks the cells again and continues to reproduce.

Do all CD4 cells become infected?

Interestingly, only one in a thousand CD4 cells become infected, but they signal to uninfected cells to die more quickly. Some cells go to sleep after they are infected. These sleeping cells are a reason HIV is so difficult to cure.

Where in your body are most CD4 cells?

Most CD4 cells stay in your lymph nodes. These are the nodules you can sometimes feel in your neck, armpits or groin, but there are hundreds all around your body. Less than 2% of your CD4 cells are circulating in blood.

What is a CD4 count?

A CD4 count is the result of a blood test. It tells you how many CD4 cells are in a small amount of blood (a cubic millimetre, abbreviated to “mm3”).

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After diagnosis the CD4 count indicates how much damage HIV has caused to the immune system. In general, the lower the CD4 count, the higher the risk of having HIV-related complications.

What is a ‘normal’ CD4 count?

CD4 counts vary a lot. About 95% of HIV negative adults will be between 400 and 1,600, with a few people even higher or lower. A CD4 count of 500 or higher is considered “normal”, but as long as your CD4 count stays above 350, there is a very low risk of HIV-related problems.

How do CD4 counts change when not on treatment?

The CD4 count drops in early infection but then recovers. Then, usually over several years, it gradually goes down by an average of 60 cells/ mm3 each year. In some people CD4 counts will fall much faster and in some people much more slowly.

What is a CD4% and when is it used?

The CD4% is the percentage of total white blood cells that are CD4 cells. A normal CD4% is about 40%, but the normal range is also wide (about 25% to 55%).

The CD4% is used as a more stable indication of whether there has been a change. So if you get a CD4 count that is much higher or much lower than you expected, a CD4% will indicate whether this is real.

Children are monitored using CD4% because CD4 counts are much higher for babies and young children.

At what CD4 count should I start treatment?

Current UK guidelines recommend treatment at about 350, but you can use treatment earlier if

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Summer 2012

Rebecca McDowall

i-base 0808 600 8013

you want to reduce the risk of infection to sexual partners.

The ongoing START study will provide evidence for whether earlier treatment is better.

How often should by CD4 count be monitored?

This will depend on your current health and whether or not you are on treatment. Most people see their doctor every 3-4 months. This will usually include a CD4 test, especially if you are not on treatment or if you are on treatment but your count is less than 350.

If you are on treatment with an undetectable viral load and a high CD4 count (above 500), you may only need your CD4 count tested every 6-12 months.

What does ‘CD’ stand for?

CD stands for cluster of differentiation – a geeky bit of information that is unlikely to interest many people. Cells in the immune system are classified by these molecules (glycoproteins), which are found on the surface of the cell. The number after CD (ie CD4, CD8, CD38 etc) is used to differentiate between the many different types of these surface markers.

Should I worry about CD4 changes?

Although the CD4 test is important, there is a lot of natural variation. The count can varies depending on the time of day (lower in the morning), after exercise (higher than after resting) and things like diet, stress and other infections.

There is also variation in the accuracy of the test. So a result that is 20% higher or lower than your last result would not be interpreted by your doctor as being any different.

The general trend is more important than any one result.

ask a question

by email, online or phone

questions@ i-Base.org.uk www.i-Base.info/qa

0808 800 6013

take control of your treatment

Gemma, 39 yrs old 8 years HIV Positive Bournemouth The light keeps shinning!

The light in my life dimmed dramatically on the 19th August 2004. Single, pregnant and scared.

Receiving the ‘’positive’’ results with a room full of medical staff was very overwhelming. From then through to January 2005 the light nearly went out with the news my Son was also positive and was then put into adoption against my wishes.

The fight for me to live and move on and become someone all my children can be proud of carries on.

I am now living for me. I have a wonderful small family and truly amazing family of friends. I am striding into my future with leaps and bounds, sometimes the occasional step sideways, but never for too long.

I am a volunteer receptionist at my local support centre and also co co-ordinator of ‘’Chat n Chill” (our women’s group), I am a member of Pozfem/UK I believe what doesn’t kill you makes you stronger. I believe in being open about my HIV and to fight the stigma and discrimination with education and hope.

Richard, 36 yrs old 33 months HIV Positive Bristol Something had changed that day on the bus. It was the same driver who had taken me and brought me back, but I was not the same passenger. Over time you learn to accept the virus as just a simple fact of life, but the journey HIV takes you on is one of segregation, guilt, secrecy and depression. But it’s not all bad.

My journey is also one of hope, family, community and strength. I am rediscovering myself as a consequence of HIV. I openly share my experiences online. I volunteer my time to help those elsewhere on their journey and I never again feel I need to hide because of who I am or what I have.

I have a wonderful partner, fantastic children and amazing friends. Without these things I would not have made it to where I am on my journey. HIV is something we must fight together, not on our own.�

Antonio, 23 yrs old 7 months HIVPositive Harlow Town

Day I found out I was shocked but knew it was not the end. Of course only concern was telling family. But I have got all the support and still feel great and strong and keep positive to reach my goals.

Maurice, 71 yrs old 28 years HIV Positive Stoke on Trent When I was told that I was HIV positive in 1984, I experienced a mixed bag of emotions. At that time there were no treatments. I feared that I would quickly become ill and die and was angry that the career in theatre that I had only just begun would end.

But I didn’t become ill and I didn’t die. I had a good run for many years. However, in 1994 things started to go downhill, I had memory lapses and an episode of amnesia which landed me in hospital. I was given an AIDS diagnosis and six months to live.

From then on, I lived each day as if it were my last. There have been some very dark moments, but I have never ceased to be amazed as goals that I set were reached and passed. At first it was just a matter of getting through the day, and then I aimed higher.

I am truly grateful for the blessings I’ve received and look forward to fresh challenges in the future.

Now, I am a graduate, a bit of a Globe trotter, an active trustee of several charities and busier than ever.

Amanda, 42 yrs old 4 years living HIV Positive Glasgow My HIV positive diagnosis was a relief. Finally I knew what was wrong with me, and was looking forward to feeling better.

The following weeks and months were spent attending clinic appointments, and meeting positive women for advice and support.

During this time I spent a lot of time at Glasgow Botanic Gardens. I found that being surrounded by plants and not people, helped me to accept my HIV. It was here that I decided on the name Betsy for my little visitor. I thought that as we both had to share the same body for the foreseeable future, I needed to name her.

I am in a much happier place now because of my journey with Betsy, and am proud to be positive, and to stand tall, and be snapped.

Confidential Support & Advice Barnsley’s 1st local support group, supporting people living with HIV in our Borough

Confidential Support & Advice

For further information contact

me

Barnsley’s 1st local support KPS Trebullom is a Respite and Retreat B&B for people affected by HIV set in the Cornish group, supporting people countryside. Our recent award from the Big Lottery Fund enables us to offer living with HIV in KPS Enabling Futures Project Adult Personal Development Breaks our Borough3 nights/4 days full board accommodation. For positive about change

www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710

For further information contact

me positive about change

www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710

HIV+ clients who are thinking about returning to work, retraining or volunteering, who would like to know how the changes to the benefits system will affect them, and who would gain from attending workshops to help them move forward.

Workshops on: Changes to the benefits system – what to expect Disclosing status – how best to do it The Equality Act 2010 – understand your rights Moving towards voluntary work or employment Plus a therapy, craft workshop and trip All fully funded Summer Camps For children aged 5 – 15 and one parent/ guardian. Fully funded weekend activity breaks

T: 01566 86378 E: sjarvis@kpsdirect.com www.kpsdirect.com

Martin Jones

The World AIDS Conference is a huge, multistranded meeting attracting 24,000 participants from 183 countries; a truly global affair. An important theme at the 2012 meeting was the socalled 'leaky cascade' which describes retention in HIV care across different settings. For example, in sub-Saharan Africa, of 100 people who test HIV positive, 72% have a CD4 count performed, 40% is eligible for anti-retroviral therapy and only 25% starts ART (anti-retroviral therapy). In the richest nation in the world the figures are startlingly similar: of 100 Americans with HIV, 80 are diagnosed, 62% are linked to care, 41% stay in HIV care, 36% start ART and only 28% are adherent to treatment with undetectable viral loads.

In order to break up the week of presentations and to gain some local perspective I took up the offer of an Engagement Tour, enrolling for a visit to La Clínica del Pueblo. My group of four was shown around La Clínica and its youth facility, ¡Empodérate! ('Empowerment!') by Chief Programs Officer, Catalina Sol. Washington DC is home to 55,000 Latinos of whom 37% is from El Salvador.

Many arrived in the 1980s, fleeing war. La Clínica was founded in response to the needs of these displaced, often unentitled people with the goal of building "a healthy Latino community through culturally appropriate health services focusing on those most in need". This involves working against prejudice, unequal access to healthcare and the barriers faced by migrants including deportation.

Today La Clínica is an impressive modern health centre where HIV is the third most common diagnosis amongst clinic users (after diabetes and hypertension). Bilingual staff work with individuals and the community to overcome cultural barriers to HIV testing including a fatalistic 'better off not46

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knowing' approach to health. Catalina explained that this means that people at risk may avoid diagnosis because of the belief that knowledge can lead to depression, disease progression and more rapid death. Late diagnosis is a significant issue with 42% of those newly diagnosed with HIV developing AIDS within twelve months of a positive HIV test result.

In a nearby, similarly modernised building, ¡Empodérate! ('Empowerment!') the Youth Program Manager, Manuel Diaz-Ramirez explained La Clínica's work targeting young Latino men who have sex with men and young maleto-female Latinas. Working against stigma and prejudice, ¡Empodérate! provides HIV prevention, counselling, support and testing.

The modern facilities and recently acquired federal funding of La Clínica are in contrast to its humble beginnings in 1983 when a volunteer doctor worked in a single room, one night a-week.

Building capacity within the Latino community through community health workers who share the language and culture of the population that they serve, La Clínica is in the best tradition of the many HIV services that have arisen and been developed by communities affected by HIV in response to the epidemic.

Catalina's engagement tour provided me with a fascinating insight into the inequalities of the US health system. I came away reflecting on how fortunate we are to enjoy the benefits of the UK National Health Service and fully funded HIV care for those who need it.

Martin Jones’ attendance at AIDS 2012 was made possible through the Gilead Excellence in Nursing Award, which Martin won in 2011. +++-

Autumn 2012

congratulates

Paul Fleming on his appointment as Fundraising and Communications Officer at Positive East Memory Sachikonye for organising a fab, varied and extremely inclusive UKCAB meeting on generics.

Brian West on his appointment as Chair of European AIDS Treatment Group

NLTSG on the occasion of their 20th birthday

Birmingham HIV Partnership

Peter Shapcott on his retirement

Birmingham HIV Partnership - for working together on the joint funding bid for Birmingham services

Co-Chair Vacan

news: treatment 1 in 5 Drop Atripla

One-in-five people who start Atripla (efavirenz/tenofovir/emtricitabine) eventually choose to change therapy due, more often than not, to neuropsychiatric symptoms such as insomnia, abnormal dreams, dizziness, anxiety, or depression.

These symptoms are usually worse in the first few months of taking the drug (or the efavirenz component as a single tablet Sustiva) and improve over time, but for some people the side effects persist.

Dr. Andrew Scourfield and Dr. Mark Nelson and colleagues from London’s Chelsea and Westminster Hospital and Imperial College looked back across the case notes of 472 people who had started HIV therapy with Atripla.

They found 81% were still taking the drug one year later.

Central nervous system side effects were the most frequent reason for people switching therapy, reported by 71%; for 44% it was nightmares or vivid dreams, 43% insomnia, 35% depression.

Other reasons for treatment discontinuation were liver toxicity: 8%; skin rash: 7%; virological failure or resistance: 7%.

Around half of all people who switched from Atripla changed treatment between weeks 12 and 52 of therapy. Over one third switched 52 weeks after starting Atripla.

Three people took intentional overdoses in suicide attempts that they directly attributed to their CNS toxicity (1 of these was on treatment for hepatitis C).

“With the advent of new combination tablets and treatment strategies, physicians should elucidate whether individuals have continuing CNS toxicity on Atripla as this group may benefit from alternative agents,” the researchers recommended.

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CD4 Count Unaffected by Alcohol

Drinking alcohol doesn’t appear to suppress CD4 cell counts among people living with HIV taking antiretroviral therapy, according to new research. Using survey data on alcohol consumption and CD4 cell count information of more than 1,100 people living with HIV initiating HIV treatment, researchers found that neither how often people drank nor the total amount of alcohol that was consumed over a week had an effect on their total CD4 cell count.

The researchers acknowledged ‘alcohol’s negative effect on HIV medication adherence and viral suppression and its association with increased transmission behaviours, not to mention liver toxicity, particularly among those coinfected with hepatitis C or hepatitis B—”screening for alcohol use and brief interventions encouraging reduction or abstinence in alcohol use is essential to optimize the management of HIV.” +++-

Autumn 2012

Robert Fieldhouse

Cancer Survival Rates up for Positive People

Professor Mark Bower from Chelsea and Westminster Hospital, London presented encouraging data on cancer survival rates among people living with HIV at the recent British HIV Association conference in London.

Professor Bower told assembled delegates, “insist that the oncologists treat your patients properly, in the same manner as they would someone HIV negative.”

There is rising incidence of many, what doctors call, non-AIDS cancers (meaning if you get it you don’t receive an AIDS diagnosis). These unrelated to current or lowest ever CD4 cell count, and the risk does not appear to be reduced by HAART, for the most part viruses and lifestyle are the cause.

In the early 1980s people with AIDS-related lymphoma would survive for an average of 3 months. Five year survival was zero.

By the early 1990s “it was left in folklore that you can’t treat people living with HIV with chemotherapy”, according to Professor Bower.

He stressed the importance of a strong working partnership between HIV clinicians and oncologists; “If you are working in a centre where you aren’t talking to each other, your patients will die.”

Back in 2008 the British HIV Association produced its own set of malignancy guidelines.

Professor Bower said it is now the case that there is no difference in survival for people living with HIV with a range of cancers, citing anal, lung, testicular and Hodgkin’s disease survival rates for people with HIV compared with HIV negative people. 5-year survival rates for lymphoma are now 63% for people living with HIV and 61% for HIV negative people.

But he did caution that people living with HIV should be treated with “aggressive opportunistic infection prophylaxis” and GM-CSF, which stimulates stem cells to produce immune cells granulocytes and monocytes.

People’s total CD4 cell counts tend to crash on chemo placing them at risk of infection.

Reflecting survival rates for people living with HIV and a range of cancers are now on a par with the HIV negative population Cancer Research UK has lifted the bar on people living with HIV entering investigational cancer drug trials. www.baseline-hiv.co.uk

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HIV may be Shed in Semen despite Undetectable Virus in Blood

About 8% of gay and bisexual men with HIV have detectable HIV viral load in their semen from time to time even when their blood viral load was fully suppressed, latest research suggests.

Effective HIV treatment lowers the level of HIV RNA in the blood and reduces the risk of HIV transmission.

But transmission is also influenced by viral levels in semen or vaginal fluid and these may not always match levels in the blood.

French researchers evaluated HIV-1 shedding in the semen of 157 positive men taking HIV treatment with an undetectable HIV viral load in blood and no apparent sexually transmitted infections.

They found semen viral load was detectable in 23 out of 304 samples, giving a prevalence of 7.6%. The median semen viral load was 145 copies/mL, with a range from 50 to 1475 copies/mL 32 people (21%) were found to have asymptomatic sexually transmitted infections including Ureaplasma urealyticum, syphilis, Gardnerella vaginalis , chlamydia , gonorrhoea, and mycoplasma.

The researchers found no association between the presence of STIs or hepatitis B and detectable semen viral load.

The researchers concluded, “Whether such levels of [semen viral load] are infectious remains to be determined.

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49

Where can I find HIV Life Assurance?

HIV life assurance has now been in existence for over three years and since its launch there have been many new products launched aimed at people living with HIV. It really is wonderful news that HIV positive people now have increased access to life assurance and mortgages.

When I started campaigning on these issues more than 14 years ago, it was my dream that people living with HIV would be able to access life assurance and mortgage products in the same way as any other community and that they would not feel excluded or discriminated against.

Things have changed so much recently that we’ve even been getting enquiries for life assurance from people who are now being offered life assurance by their own bank. Martha came to us after being offered life assurance by her bank and being asked questions about her health status.

Martha told us, ‘‘I’ve been accepted for a mortgage through my bank and they have offered me life assurance. They have asked me whether I’m HIV positive on the application form and I’m really concerned about answering this because I’ve been HIV positive for the last 10 years’.

Martha continued, ‘what is likely to happen if I answer the HIV questions on the application form? I’m not really sure that I would like to share my medical details with my local bank, but equally I would like to make sure that my mortgage is covered to protect my children’.

Thinking about life assurance or mortgages?

One of the additional products that you are likely to be offered when taking out a mortgage with your bank or building society is life assurance.

Until recently life assurance was unavailable to HIV positive people, which in some cases made finding mortgages difficult.

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Times have changed dramatically in a relatively short space of time on these issues, which has meant that people living with HIV are now facing new challenges when interacting with their bank.

We are receiving calls every single week from people not wishing to answer questions from their bank.

If you are asked about your HIV status by your bank and you are not comfortable with sharing this information then you should seek independent financial advice. Unusual Risks are specialists at finding life assurance and mortgages for people living with HIV. Our latest research into HIV life assurance shows that 66.6% of the top life assurance companies are offering HIV life assurance through independent brokers. This is in direct contrast to the life assurance companies that only offer HIV life assurance through banks where this figure is just 40%.

After further research we have established that very few of the HIV life assurance applications that are being submitted through banks are actually being accepted, this is in direct contrast to 90% of HIV life assurance applications that we have submitted which have been accepted.

And Martha?

We arranged a HIV life assurance policy in trust to her two children for a sum assured of £250,000 at a premium of £65.90 per month. We also offered quotations for £100,000 of cover at £35.00 per month and £200,000 of cover at £54.53 per month Unusual Risks support worthy causes and HIV charities, such as NAM/AIDSMAP from every HIV Life Assurance and HIV Mortgage that we arrange on your behalf. We also offer an introducer scheme for any HIV support worker or medical professional

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Autumn 2012

Chris Morgan

to earn donations for their registered charity.

Our new brochure is now available containing details of our charity scheme.

Chris Morgan is the Marketing Manager of Unusual Risks Mortgage & Insurance Services. www.unusualrisks.co.uk Editor of Positive Finance Magazine www.positivefinance.info and was a consultant to the Association of British Insurers HIV Working Group for over five years. He may be contacted by phone 0845 474 3075 or by Email chris@unusualrisks.co.uk

Unusual Risks Mortgage & Insurance Services The UK’s Leading HIV Life Assurance Specialists

Call us: 0845 474 3075

Web: www.unusualrisks.co.uk e-mail: enquiries@unusualrisks.co.uk AUTHORISED AND REGULATED BY THE FINANCIAL SERVICES AUTHORITY – please note most buy to let mortgage are not regulated by the Financial Services Authority. Think carefully before securing debts against your home. Your home may be repossessed if you do not keep up repayments on your mortgage.

Baseline Ad Unusual Risks.indd www.baseline-hiv.co.uk

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14/07/2011 10:01 51

Kenya BASELINE files the first in a series of reports from Africa

It’s ten years since pharmaceutical giant Abbott launched its Access to Care Programmes in Africa. Over the past decade The Abbott Fund has invested more than $250 million in programmes to support HIV/AIDS education, prevention, testing and treatment roll out as well as to strengthen healthcare systems and build local capacity. The key to success and sustainability has been to facilitate lasting partnerships. Over 5 days in June I witnessed first hand the incredible impact such investment is having in Kenya and Tanzania.

Kenya, in eastern Africa is a country of some 39 million people. Life expectancy is just 55.3 years. Half the population lives below the poverty line. The first cases of HIV were described in 1983 and HIV was declared a national disaster in 1999.

Unlike England, Kenya has National AIDS Strategy.

At around 8 percent, HIV prevalence among women in Kenya is twice the rate you’ll find in men. Prevalence among injecting drug users in Mombasa exceeds 20 percent.

HIV burden is greatest in the western part of the country. Geographically close to both the Congo and Uganda it’s here that HIV first began to spread in Kenya. It’s also a region where male circumcision rates are lower; only 15% of men in the Lake Victoria region were circumcised.

This along with cultural practices such as wife inheritance has played a part in allowing HIV to spread.

Kenya was the first country in Africa to develop a policy on male circumcision. Even around Lake Victoria, where circumcision was not a cultural norm, 50% of men are now circumcised and Kenya 52

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is regarded as the ‘leading’ country in Africa for circumcision.

But by 2015 Kenya anticipates being able to close its male circumcision programme and make the procedure routine for boys at a young age.

In 2006 Kenya’s President announced that HIV treatment would be free in public hospitals.

Kenya was awarded US$ 345,103,870 from the Global Fund to fight AIDS, TB and Malaria. In total $40 million is managed by the Red Cross on behalf of civil society organisations. The Ministry of Finance on behalf of the Kenyan Government manages the remaining $305 million. The intention is bring about universal access to HIV treatment by 2013. But there’s still a way to go.

Current estimates suggest that just 500,000 of the 1.4 million people living with HIV in Kenya are taking antiretroviral drugs, meaning there’s an unmet need of 700,000 people. To put this in perspective, only 10,000 people were receiving HIV treatment in 2004; a scale up of phenomenal force.

Here people typically initiate treatment at a CD4 cell count around 200. The Global Fund monies are intended to assist Kenya in being able to implement World Health Organisation guidelines which recommend people begin treatment at 350 CD4, the same as here in the UK. The Kenyan Government distributes 15-20 millions condoms each month, believing that, “you only need a small proportion (5-10% of the population) to use condoms to affect the epidemic, according to Dr. Peter Cherutich, Head of Kenya’s National AIDS and STI Control Programme

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Autumn 2012

Robert Fieldhouse

(NASCOP).

Condom use within marriage remains a challenge. The condom was first introduced into Kenya as a protective mechanism for HIV prevention. “It should have been marketed as family planning; there’s no stigma around that,” Dr. Cherutich told me.

“The middle classes don’t access testing; they see it as beneath them to go for an HIV test.”

5 million Kenyans take an HIV test each year.

Population surveys asking if you’ve ever been tested in the past 12 months show rising testing rates- up from 10% in 2003 to 50% in 2009. By the end of this year NASCOP estimates testing rates will hit 70%.

95% of women take up the offer of an HIV test in antenatal clinics. Vertical HIV transmission (from a woman to her child) has fallen dramatically as a result. The current rate is 10-15 per cent and the aim is to bring it below 5 per cent by 2015. In some regions vertical transmission has been eliminated completely.

Since last year people seeking treatment for malaria and typhoid will have also been offered HIV testing Abbott recently donated its 20 millionth HIV test in developing countries across Africa and Haiti in the Caribbean.

Coming forward for HIV testing can still be a challenge. “Around 65% of those who have ever tested are women. The middle classes don’t access www.baseline-hiv.co.uk

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testing; they see it as beneath them to go for an HIV test.” Dr. Cherutich said; “The best way to fill the gap is to have testing kits that can be distributed through pharmacies.

Though Dr. Cherutich acknowledges Kenya is still “trying to develop a plan to roll out homebased testing” he sees it as pivotal in closing the gap on the undiagnosed. Home-based testing is being done on a large scale in western Kenya, it is possible this strategy has played a role in reducing vertical transmission rates.

Since 2009 it has become clear that most HIV transmissions occur within discordant couples. In recognition of this, perhaps, the government has grabbed the concept of Treatment as Prevention by the horns and has already begun dialogue to roll out pre-exposure prophylaxis to people at high risk of HIV acquisition.

Introducing a medical insurance scheme for middle class people at least is a hot topic right now in Kenya. There’s already a scheme for civil servants and a number of employer contribution schemes.

But right now HIV services are free. During my trip I visited the Liverpool VCT Care and Treatment Centre, a not for profit non-governmental organisation, with 270 staff across 4 distinct geographical regions- Nairobi, the Eastern Region, the Central Province and Western Province.

Liverpool is Kenya’s largest provider of voluntary counseling and HIV testing outside of the Government.

Liverpool was set up in 1998 as a research study from Liverpool School of Tropical Medicine to assess the feasibility of scaling up HIV testing in ++

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Robert Fieldhouse

Wim Vandevelde, Joshua Olang, Dr. Lilian Otiso, Gladys Nyasuna-Wanga Nikos Dedes, Robert Fieldhouse and Jacinta Sila.

Africa. Since 2001 Liverpool VCT has established more than 500 voluntary counseling and testing sites.

As well as providing HIV testing and counseling, Liverpool provides treatment and care to 13,000 people with HIV and currently manages 6,500 people on antiretroviral therapy.

“Ten years ago when all this started we did not have the capacity to treat most of the population so we needed to manage the number of people who came into testing,” Dr. Lilian Otiso, Director of Services at Liverpool told me.

The clinic uses a network of community workers who are paid a small stipend, relative to 10% of the minimum wage; in the future they plan to have 400 of them; in Rwanda volunteerism works but in Kenya the cost of living is high.

After developing a partnership with leading Kenyan mobile network operator Safaricom and seeking funding from the Elton John AIDS Foundation and Comic Relief Liverpool operates what is now the largest telephone helpline in eastern and central Africa.

Being a man who has sex with men is illegal in Kenya.

Liverpool has established good working relationships with non-governmental organisations working with MSM. “We had to house the Gay and Lesbian Association of Kenya”, Dr Otiso said. “We built their capacity in terms of financial management. Now they are on their own 54

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and advertise for their own jobs. We are more tolerant than our neighbours.” [meaning Uganda and Malawi].

MSM are recognised as a most at risk population in the Kenyan AIDS Strategic plan, giving the clinic a green light to provide prevention and care services to them.

Similar to the UK, the way that HIV testing is provided has radically evolved over the past 5 years. Exactly like the UK there is an emphasis on “doing more with the same budget or less.”

Pre- and post-test discussion is now done in 20 minutes.

Despite huge investment from companies like Abbott, its philanthropic foundation, The Abbott Fund and other global health foundation it’s becoming increasingly difficult to keep up, “funding is plateauing when we need to expand,” Joshua Olang, Liverpool’s Operations Director told me.

Getting testing, treatment and care services out into the community is a must, it saves time and money. If there’s a country that will roll out home testing, it will be Kenya,“ NASCOP’s Dr. Cherutich assured me. Judging by Kenya’s impressive scale up of condoms and HIV treatment over the past five years, I am sure he is to be believed.

BASELINE would like to thank Abbott and the Abbott Fund for facilitating Robert Fieldhouse’s visit to Kenya.

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Autumn 2012

Couffy - A Magical Place ‘I shall be telling this with a sigh, somewhere ages and ages hence: two roads diverged in a wood, and I took the one less travelled by, and that has made all the difference.’

Robert Frost.

My partner and I now live in the heart of the countryside, hidden away in the Loire Valley. We run a retreat in this wonderful, peaceful place and it has done good things for everyone who has stayed with us.

‘There IS life after diagnosis and there IS life with HIV.’ Simon lived in London, and had done for 21 years; a professional working with adults with learning difficulties and as an advocate – he had the ears of Government ministers and chiefs of the NHS. It was a hectic, well-rewarded, yet somehow latterly empty, life.

1300 miles South West, in Cornwall I was working as a Deputy Head in a large Primary school; in my 24th year of teaching. Like Simon’s, my life was high – the pressure intense. It had also been rewarding but was becoming increasingly less so.

At about the same time, after exploring different alternative therapies, we had both discovered Reiki and were both being trained as healers, him in Seichen, me in Usui.

In 2004, Simon had bought a house in France; dilapidated, old but beautiful and was using it as a getaway, as a source of inspiration away from his job. I meanwhile had left my job and gone abroad to teach. On my return to the UK, two years 56

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later, I decided to retrain as a website designer.

After qualifying, I set about finding clients on the internet.

Simon contacted me about a website that he hadn’t been able to find anyone to build for the company he owned at that time; a part of the site was entitled: ‘Couffy – A Magical Place’. We began to work together and as we progressed it became very clear we had much in common and our ideals were much the same. Eventually, it was decided we should meet to finalise the website as it had become rather large and unwieldy and difficult to manage by telephone and/or the internet.

The moment we met, we both KNEW, with a absolutely no doubt, that together, we were to go to France, renovate the house and open the retreat, which at that time seemed a terrifying, yet inevitable, prospect.

And, here, on ‘the road less travelled’, four years later, the retreat is ready.

Running alongside this ‘love story’ is my journey of dealing with my positive diagnosis in November 2004. I was completely and utterly stunned by this. I had been in a monogamous relationship for almost 18 years. The illnesses I had been getting were not explained, and were increasing in frequency. I (unwillingly) had a test in order to discount HIV…which, in my mind, I could not POSSIBLY have, given my circumstances.

I. Was. HIV. Positive. My viral load was

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Summer 2012

Nigel Bray

unmeasurable as the technology at the time only registered up to 1 MILLION copies and my CD4 count was 15. THIS was why I was becoming ill; HOW that had happened I couldn’t begin to understand.

‘People come in pain and fear and leave better – not cured, but with hope and maybe an ability to look at things differently and have a good life.’

There followed months of opportunistic illness as my immune system was jolted back into existence and gradually, thanks to HAART, I recovered and am now well and healthier than I have ever been. I left my husband, to be with Simon and we moved to our wrecked old French house in September 2007.

HERE, my true life began.

I recount these two stories, these two threads of my life to say that there IS life after diagnosis and there IS life with HIV. The work we do here is simple, yet profound.

Reiki healing is available. What does the healing is the place itself. Being here is transformational, and getting here is easy – though isolated, we are only 40 minutes from London.

My diagnosis was a MASSIVE trauma for me – it should not have been possible – and I was very www.baseline-hiv.co.uk

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sick. But I recovered. I am at ease with my status and so is my partner, for whom thankfully, it was never an issue.

This article is really to explain that everything is “gonna be alright”. I have experienced the despair, the horror, the shame and all of those things that being HIV positive can mean and so have those people who come to stay with us, here in France.

We are healers. I can give counsel. We cook, we laugh, we make music, there is silence if you want it. People come in pain and fear and leave better – not cured, but with hope and maybe an ability to look at things differently and have a good life wherever they go back to.

Some come simply to get away (we always say ‘Come TO, rather than ‘retreat FROM) and see France’s hidden secrets. We are in ‘Chateau Country’ here in the Loire Valley and some people come just for a simple holiday; others come for an extended period to write or paint. Others come to seek help from a terror that seems too hard to deal with. All of these reasons are valid and OpeningSpace enables ALL of them.

It would be fine indeed to think we could help some of you, reading this article. You would be most welcome.

I think often of the Robert Frost poem – taking the ‘road less travelled’, though challenging sometimes, can bring the greater joy.

For more details see: www.openingspace.co.uk ++

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The Last Session: Tristan Bates Theatre, London 23 October 2012: Review Robert Fieldhouse The Last Session was a hit off Broadway in 1997 at the height of excitement about effective new HIV therapies. It’s taken 15 years to bring about its European debut in London.

Darren Day has a tough call playing a gay musician (Gideon) dying with AIDS who decides to record one last album documenting the last ten years of his life and his struggle with AIDS. AJ Dean plays Buddy, Gideon’s biggest fan who turns up as a replacement backing singer for the session. Basically a homophobic Christian, Buddy’s Baptist beliefs begin to flounder when the reality of the situation kicks in. Buddy is saved from his bigotry and offers Gideon the hope that with the love of his partner Jack and his friends he can move on with HIV. Fabulous female backing singers Tryshia and Vicki, whose careers have been cut short by kids and husbands are seen to find their artistic souls 59

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once more.

But it is Day who holds the piece together.

The gospel inspired songs portray Gideon’s struggle with his sexuality and HIV and most importantly the profound love he feels for his partner Jack.

I needed the loo so missed the first act closing number Going It Alone, for which, my friends tell me its well worth buying the DVD or cast recording, out early next year.

This play is perfect to tour small theatres across the UK. Times may have changed with HIV, but The Last Session is more than a historical piece, it sheds an unfortunate light on emotions and attitudes to HIV that still hold true today.

Bucket rattlers outside the Tristan Bates Theatre in Covent Garden raised £3,112.58 for the Make a Difference Trust.

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Autumn 2012

UK UKAND and IRELAND Ireland

HIV

COMMUNITY COMMUNITY GRANTS 2013 AWARD 2011

Sponsorship by Gilead Gilead is proud to announce the opening of 2013 HIV community grants application process. The grants are aimed at supporting HIV patient and community groups or organisations. A total of up to ÂŁ125,000 is available for core funding or project specific funding.

Integrity, Teamwork, Excellence?

This Award aims to recognise a Particular attention will be given group who has made a to community applications that promote or significant or unique contribution to enable the active involvement of people living with HIV. patient groups or organisations in Given in memory of Martin Flynn, treatment, care delivery orJpolicy Community Advocate 1952-2008, decisions. two grants of ÂŁ5000 each will be

fund the corefor activities of Formade moretoinformation applicants the chosen group. criteria and including eligibility applications forms pleasePLEASE email YOUR NOMINATIONS ukcommunity@gilead.com To request a nomination form contact us at:

Applications must be received by ukcommunity@gilead.com 15th March 2013

Date of Preparation: OctoberApril 20122011 Date of preparation: 001/UK/12-10/CI/1108 001/UK/11-03/MM/2872a

Robert Fieldhouse

news: hepatitis Poor Uptake of Hep C Protease Inhibitors

Less than 1 percent of the people eligible to be treated with the new hepatitis C protease inhibitors, telaprevir or bocepravir are receiving them in the United Kingdom.

This is despite recommendations for NHS use from both NICE and the SMC in Scotland.

Out of the 47,520 people who are diagnosed with genotype one hepatitis C in the UK, only around 450 are currently receiving triple therapy containing one of the new medicines alongside pegylated interferon and ribavirin.

Charles Gore, Chief Executive of The Hepatitis C Trust told BASELINE; “Unfortunately, we are still at a stage where only half of those who are estimated to have hepatitis C in the UK have been diagnosed. This is one of the reasons treatment rates are so low. However, this is not the only reason; patients are not being made aware of the advances in treatment. Even those who are aware still can’t access them. The Trust receives calls from people all over the country who report such problems. We have to see greater numbers being treated.”

By treating hepatitis C, there is a potential to clear the virus which causes the condition – referred to as Sustained Virologic Response. Among people living with hepatitis C only clinical trials have shown that triple therapy can significantly improve the number of patients clearing the virus compared to dual therapy.

Clinical trials of both these new drugs are underway in people living with both HIV and hepatitis C and expected to report in the coming months.

Hepatitis C is a key driver of the rising number of deaths caused by liver disease. In his key note speech at the Conservative Party Conference in October, the new Secretary of State for Health, Jeremy Hunt, made reference to liver disease as one of the big killer diseases in the UK where more needs to be done to make survival rates the best in Europe.

Both telaprevir and bocepravir became available in the UK last year, with NICE publishing individual technology appraisal recommendations in April 2012. Being recommended for use

by NICE means that the medicines should be made available to patients within 90 days of the recommendation in England and Wales. This ‘direction’ is a statutory requirement and also featured in the NHS Constitution.

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Idenix Hep C Drug Placed on Hold Idenix Pharmaceuticals said that the U.S. Food and Drug Administration has placed a clinical hold on the development of one of its experimental hepatitis C drugs.

The FDA is barring Idenix from testing IDX19368 in humans. The FDA had already halted trials of Idenix’s hepatitis C drug IDX184 due to concerns over heart damage.

Vertex Shelves Hep C Med Vertex Pharmaceuticals Inc recently announced that it will discontinue development of an experimental drug to treat hepatitis C after it failed to show sufficient efficacy.

The company, which was developing the drug, known as ALS-2158, said it will continue development of another hepatitis C drug, ALS-2200, after it showed promise in an early trial.

The company said it is planning one mid-stage trial of ALS-2200 in combination with the alreadylicensed drug ribavirin and one trial to evaluate ALS-2200 in combination with the hepatitis C protease inhibitor telaprevir.

Autumn 2012

Robert Fieldhouse

news: hepatitis Interferon-Free Combo Achieves Great Results in 12 weeks

An experimental interferon free all-oral drug regimen developed by Abbott Laboratories has suppressed the hepatitis C virus in most patients in a new clinical trial.

Hepatitis C is a viral disease that attacks the liver, and is believed to affect about 180 million people worldwide.

The study, titled Aviator, tested three experimental Abbott drugs in a mid-stage clinical trial of people with hepatitis C. One of the drugs, ABT-450, is a protease inhibitor, which is in the same class of drugs as two medicines that went on sale last year- bocepravir and telapravir. ABT-450 was given along with a booster, ritonavir, which many of you will be familiar with as an HIV protease inhibitor booster.

The other two experimental drugs assessed in the latest study are ABT-267, which is an NS5A inhibitor, and ABT-333, a nonnucleoside NS5B inhibitor. In addition some patients were given the drug ribavirin, which is already licensed for the treatment of hepatitis C. The trial tested various combinations of these drugs for varying durations up to 24 weeks of treatment, in both patients who had undergone prior treatment and those new to treatment.

The study tracked how many patients had a sustained virologic response 12 weeks after the end of treatment.

The regimen with the highest SVR12 rates contained the Abbott experimental drugs--ABT-450 with ritonavir, ABT-267 and ABT-333--plus ribavirin for 12 weeks.

This regimen led to a sustained virological response 12 weeks post-treatment in 99 percent of 77 people who had never taken hepatitis C treatment before, and 93 percent among 41 patients who previously hadn’t responded well to therapy containing the injectable drug interferon.

About 1 percent of patients discontinued treatment because of adverse events. The most common were fatigue and headaches.

Abbott will now test this combination, with and without ribavirin, in late- stage clinical trials. In one of these trials, ABT450, ritonavir and ABT-267 will be coformulated in a single pill, which will reduce the pill burden from that of the Aviator study.

If trials continue to go well it is likely Abbott will be in a position to begin selling the drugs in 2015.

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Vertex to Study Hep C Combos with GSK and Janssen

Vertex Pharmaceuticals is to study its nucleotide analogue hepatitis C virus (HCV) polymerase inhibitor VX-135 with investigational hep C medicines from GlaxoSmithKline (GSK) and Janssen.

Vertex will study VX-135 for 12 weeks with GSK’s non-structural 5A (NS5A) inhibitor GSK2336805, with and without ribavirin.

VX-135 will also be studied for 12 weeks with Janssen’s hepatitis C protease inhibitor simeprevir (TMC435).

The studies will be open to people with chronic non-cirrhotic genotype 1 hepatitis C who have not previously been treated.

End of the Road for BMS986094

Bristol-Myers Squibb has its clinical research into a hepatitis C nucleotide polymerase inhibitor or “nuke” for short. BMS stopped its trial on BMS-98609 (formerly INX-189), after a patient who had received a 200 mg dose of the drug experienced heart failure, “With patient safety as the priority, the Company is undertaking an immediate assessment of all patients in the study and following an evaluation of the patient data, will take appropriate actions,” BMS said in a statement.

Autumn 2012

Support for people living with HIV or Hep C in Scotland From our bases in Edinburgh, Glasgow, Lanarkshire and Inverness, Waverley Care offers 21 years of experience, and a wide range of support, information and advice.

Leeds Skyline is committed to providing quality services for anyone living with or affected by HIV living in Leeds.

Waverley Care is here for you – Contact us now for more information

Waverley Care, 3 Mansfield Place, Edinburgh EH3 6NB Tel: 0131 558 1425 Email: info@waverleycare.org www.waverleycare.org

Our support service includes: 121 emotional support, advice, information and advocacy on a number of issues including HIV medication, housing, benefits. We also offer practical support and befriending on discharge from hospital. We provide a number of support groups, drop-in sessions and workshops to help improve your well being and support you to develop coping strategies.

We offer complementary therapies City centre venue.

Confidential and welcoming environment.

Please contact us for further information: Tel: 0113 2449767 Email: leedsskyline@theBHA.org.uk Web: www.leedsskyline.org.uk Twitter: @BHAleedsSkyline

Scottish Charity No. SC036500

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

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

David Rowlands

1. Positive Help Edinburgh 13a Great King Street, Edinburgh, EH3 6QW Tel - 0131 558 1122 www.positivehelpedinburgh.co.uk 2. The Brunswick Centre Marten House, Fern Street East, St Andrew’s Road, Huddersfield, HD1 6SB Tel: 01484 469 691 www.thebrunswickcentre.org.uk

3. Faith in People The Lodge Margaret Road Leicester LE5 5FW Tel: 0116 273 3377 www.faithinpeople.org.uk

7. Sahir House 2nd Floor, 151 Dale Street, Liverpool L2 2AH Tel: 0151 237 3989 www.sahir.uk.com

4. National Children’s Bureau, 8 Wakley Street, London EC1V 7Q Tel: 020 7843 6000 www.ncb.org.uk

8. Embrace Life Luton 10-14 Park Street Luton LU1 3EP Advice Line: 01582 406782 Tel: 01582 406779 www.embracelifeluton.org

5. AVERT 4 Brighton Road Horsham West Sussex RH13 5BA Tel: 01403 210202 www.avert.org 6. AIDS Trust Cymru.

109 Walter Road, Swansea SA1 5QQ. Tel: 01792 461 848 www.aidstrustcymru.co.uk

9. Herts Aid Wellbeing Centre 501 St Albans Road Watford Hertfordshire WD24 7RZ Tel: 01920 484784 www.hertsaid.co.uk 10. CWAC Acorn House 314-320 Gray’s Inn Road London WC1X 8DP Tel: 020 7033 8620 www.cwac.org

Ten HIV Support Organisations, recommended by BASELINE Editors.

If you can recommend a local HIV or hepatitis support group email: david@baseline-hiv.co.uk 64

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Autumn 2012

@PositivelyUK

Championing the rights of people living with HIV

positivelyuk.org Free downloads: - The Pregnancy Journey with HIV - Making the most of your GP - Positively UK Magazine info@positivelyuk.org 020 7713 0444

www.staffordshirebuddies.co.uk

www.baseline-hiv.co.uk

www.positivelyuk.org

Charity Number: 1047375

SSUPPORTING olutionS EnablE HopE THE POSITIVE COMMUNITY FOR OVER 18 YEARS Supporting people living and affected by HIV in Stoke and Staffordshire Newly diagnosed? Want to meet others?

Want start a new relationship?

Unsure about treatments?

Issues at Work?

We can support you with;

 One to One Support  Advocacy & Legal Rights  Housing, Benefit & Welfare Support  Groups, Activities & Residentials  Employment & Training Support  Volunteering Opportunities  Counselling & Complementary Therapies

Tel: 01782 201251 Email: ask@staffordshirebuddies.co.uk

• Advocacy • Support Services • Complementary Therapy • Advice • Welfare & Benefit Support • Employment & Training Support

www.freshwinds.org.uk

0121 415 6670 FrESHwindS

iS a rEgiStErEd cHarity: 1079968 and iS alSo a rEgiStErEd company: 3936089

HIV in UK: 2011

‘If GPs are going to take more on HIV care, General Practice has to make sure it can meet the need.’ Dr. Simon Barton

3010:

the number of gay and bisexual men diagnosed HIV positive (the highest number ever)

2990:

the number of heterosexuals diagnosed HIV positive

‘If HIV had occurred in the 1950s we would have had no idea what CD4 cells were.’ Professor Brian Gazzard In order to remain a specialized service HIV will have to be nationally commissioned. It cannot be that there is different access to medicines in London or Luton or Lowestoft.’ Dr. Simon Barton

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1 in 5:

the proportion of gay and bisexual men who had acquired HIV abroad

48%:

the proportion of heterosexuals born abroad who were diagnosed HIV Positive

437:

the number of people who received an AIDS diagnosis

504:

with AIDS

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the number of people who died

Autumn 2012

A long-standing commitment to HIV Model, not an actual patient.

At MSD, we are committed to…

• Discovering, developing, and delivering breakthrough medicines • Improving access to our antiretroviral medicines for those in need around the world • Participating in public and private collaborations to improve health literacy for patients with HIV • Increasing access to treatment, care, and prevention– particularly in underserved communities www.msd-uk.co.uk

Contributing to HIV care for over 20 years

08-14 INFC-1049535-0000

Date of preparation: August 2012

“I need to understand what’s in my best interests, especially for my long-term health”

let’s talk Our model is HIV+ve and is not a professional model. Mike, the photographer, is also HIV+ve.

The Let’s Talk initiative is a commitment made to the HIV community from Abbott Laboratories.

Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.

National Aids Trust (www.nat.org.uk) African HIV Policy Network (www.ahpn.org) Positively UK (www.positivelyuk.org) NAZ Project London (www.naz.org.uk) Waverley Care Scotland (www.waverleycare.org) Date of preparation: June 2012 AXKAL120997

A Promise for Life