BASELINE 12

Available: Free Treatment For All In The UK Activism: Past And Future Ageing: Women Tell Their Stories Spring 2012

ISSUE 12

www.baseline-hiv.co.uk

A is for Activism

In this issue

Twenty-five years ago in the USA, a group of young men and women set up a grassroots, direct action organisation called ACT UP (AIDS Coalition to Unleash Power) to demand medicines for AIDS.

4 bylines 6 drop-us-a-line 8 headline: uk news 12 headline: global news 16 NAT interview: free HIV treatment for all 20 ageing disgracefully 24 a history of AIDS activism 28 THT relaunch the hardship fund 32 alere 34 hotline 36 BASELINE weekend 38 MAD Eurovision 41 BASELINE congratulates 42 myline Tim 44 i-base Q and A 47poz profile: John Percy 48 headline: treatment news 50 do you have life assurance?

52 my HIV nightmare 54 dear Susan 56 Joel Korn in Taiwan 58 pets: reduce the stress of living with HIV 60 headline: hepatitis news 62 BASELINE trip to Romania 64 lifeline 66 finelines and numbers

A small group of artists worked on an image they hoped would signify the group’s ethos and galvanize the gay community to act.

Overnight, images of a pink triangle bearing the phrase SILENCE = DEATH appeared on walls across lower Manhattan.

The torch was finally lit—and ACT UP’s founder, the writer and activist Larry Kramer struck the match.

Kramer is now 77 years of age and credits ACT UP as helping to save his life.

HIV treatments exist because of ACT UP activists demanding them.

To mark the 25th Anniversary ACT UP and the Occupy Wall Street movement took to the streets of New York with a single demand, that a financial transaction tax be implemented as a way of gaining innovative sustainable finance for global health initiatives.

Activists stretched a chain across Broadway at Wall Street to interrupt the flow of traffic. Holding up signs that read “Tax Wall St., End AIDS,” the demonstrators, jeered by NY Stock Exchange workers, refused to move and 10 of them were promptly arrested by cops.

The historic event was held to raise awareness among governments and financiers that they hold the key to ending AIDS. Only lack of funding and political will stand in our way.

Robert Fieldhouse 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

Spring 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

Cover Photo: David Rowlands

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 03

deadlines

for the next issue Copy 06/08/2012 Advertising 09/08/2012 Robert Fieldhouse has been working and assurance industry uses today. volunteering in the HIV sector since 1997.

Susan Cole is a Policy Officer at NAT. She coJonathan Grimshaw co-founded Body Positive ordinates NAT’s Activist Network. in 1985 and was at the forefront of HIV activism during the first two decades of the epidemic.

Simon Collins is a leading HIV advocate. He heads up HIV i-base.

Robert James Ph.D has also been involved in HIV work for many years and has just completed a Ph.D on HIV activism in England. They are planning to co-author a book on HIV activism and would like to contatct people involved in the past.

Eleanor Parkes is a disabled student living in the West Midlands who will be applying to Veterinary School in September 2012. She works at her local vets part-time and would be happy to answer any of your questions about animal care!

Joel Korn is a member of the Support and Development Worker Team at River House Trust. He is a trained counsellor (MBACP individual and group work) and is also a facilitator of Living Well’s Positive SelfManagement Programme.

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 Tom Matthews set up BP Leeds in the 1980s trade to the trade in counterfeit medicine. Busily attending medical conferences and scouting for the latest stories.

and is now a trustee of ABplus in Birmingham and the National Long Term Survivors Group.

Jane Phillips spends her time Tweeting, David Rowlands has extensive copy writing, Facebooking and fiddling about with words. photography, design and brand development experience across a range of sectors.

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.

Yusef Azad is the Director of Policy and Campaigns at NAT (National AIDS Trust).

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

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.

Chris Morgan is the man behind Compass, the gay financial advisers and Unusual Risks, the HIV financial advisers. He has been at the forefont of HIV financial issues for over a decade and co-wrote the HIV and insurance guidelines that the life 04 Spring 2012

Gareth Williams splits his time between a graphic studio and the great outdoors.

www.baseline-hiv.co.uk

UK AND IRELAND

HIV

COMMUNITY AWARD 2011

WINNERS Gilead Sciences are delighted to announce that the winners for 2011 for community groups who have made a significant and unique contribution to people living with HIV are:

The Cara Trust and

CAFPH (Centre for All Families Positive Health) For details of the Awards for 2012 and to request a nomination form please email: ukcommunity@gilead.com

Date of preparation: February 2011 001/UK/12-02/MM/????

editor@baseline-hiv.co.uk

Dear David This is just a short letter in response to the article you ran in the recent BASELINE mag about your first visit to Stafford Prison with Scott Ormerod from Staffordshire Buddies.

As you know we are still at the beginning of a long road with our support group, but we are doing great so far. At the March meeting we had 20 members attending, which is the most we have ever had. We had over 60 prisoners attend our Gay History Celebration. There was a wide range of people who attended, young, old, straight, gay, black and muslim.

Everyone who attended enjoyed the whole afternoon. Some of the guys even wished to attend the Breakthrough group to show their support. We hope to do more events during the rest of the year.

I would like to thank you on behalf of the group for your continued support. All the guys enjoy your visits and look forward to seeing you again.

Yours Faithfully Steve Gumm, GBT Rep and Breakthrough Dog’s Body, HMP Stafford.

Please send my best wishes to everyone at Staffordshire Buddies.

Thanks to you and Robert for the very professional yet communitychampioning way you’ve handled the THT Hardship Fund matter. I think the issue looks great and contains much in the way of progressive and interesting content (besides my letter, of course).

Wishing you guys a fantastic 2012.

Ian

Hi All I think your 8well films are totally brilliant and hilarious and really good and serious too and breaking all the stereotypes about people with HIV! They deserve a big award. Have you thought of putting them on vimeo which has an award scheme?? Or the BMA has an award scheme too…

Also…Did you know that somewhere, “after eights” are a euphemism for condoms?? France I think…

Xxx Alice Welbourn, The Salamander Trust

06 Spring 2012

www.baseline-hiv.co.uk

news: UK HIV monies diverted to pay for cuts: NAT report

The National AIDS Trust recently launched its survey into local council’s funding of HIV care across England. ‘HIV Social Care in England – A Survey of Local Councils’ looks into how HIV social care spending and services have changed compared with a similar survey

by NAT in 2008.

Social care can include help coming to terms with diagnosis, managing treatment, or relationships, as well as peer support, counseling, and personal care.

In a time of cuts in local authority funding, the report shows that many local councils still recognise the real social care needs of people with HIV, and aim to meet them - largely due to an allocation for HIV social care within local council funding from central Government - as well as lobbying at the local level by people with HIV and organisations which support them.

However, the report says restricted budgets are having a negative impact on HIV social care provisions. Money is being diverted from the HIV social care allocation to make up for cuts in other areas meaning some services are less available. In addition, it says, people with HIV must now be determined to have ‘substantial need’ to qualify for any individual social care support. Key recommendations include: • Local councils must improve their needs assessments and their evaluation of the impact of the social care they provide to people with HIV • Individual assessments for eligibility for social care must take full account of the complexities of HIV, including the psychological impact, stigma and fluctuating • Funding for voluntary sector organisations to provide low threshold open access services for anyone with HIV in need is more important than ever and must be continued.

• Social workers need appropriate training around HIV. Deborah Jack, Chief Executive of NAT, said: “It is crucial for local councils to ensure that the specific allocation for HIV social care within the Formula Grant is spent on meeting the needs of people with HIV and not divert to other areas. “The preventive value of social care for should also not be overlooked by local councils. By investing in simple low cost social care interventions, people with HIV are more likely to stay well, adhere to treatment and take the necessary steps to avoid passing the infection on – which saves the NHS money in the long term.”

08 Spring 2012

Pilot PrEP trials beginning in UK, France and Canada and USA

In the UK the PROUD trial for PrEP (pre-exposure prophylaxis), to assess the efficacy of Truvada to prevent HIV transmission has been held back by the regulatory research body National Institute for Medical Research (NIMR). It is understood that NIMR believe that the iPrEX study answered questions about the efficacy of PrEP in a clinical trial although PROUD investigators are pointing out that PrEP in a real world setting still has to be evaluated. iPrEX achieved an overall protection rates against HIV of 44% although with 90% adherence to daily tenofovir and emtricitabine (the drugs in Truvada), protection rose to 73%.

Permission for the full PROUD trial using 5000 participants will be reapplied for next year; in the meantime a pilot study using 500 volunteers will be a ‘dry run’ for the larger trial.

In the USA researchers have just announced a trial of preexposure propylaxis (PrEP) is to take place in California. Truvada (tenofovir, emtricitabine), already approved to treat HIV

Chris O’Connor

Virgin Care win new sexual health contract

infection, will be prescribed to 700 HIV negative gay and bisexual men and transgender women in Los Angeles, San Diego, and Long Beach who are at high risk of infection.

The French PrEP trial, IPERGAY, has begun recruiting its 300-person pilot study in France and Canada.

This study will involve HIV negative men who have sex with men and HIV negative trans men who have had anal sex with men without routine use of condoms, with at least two different sexual partners in the six months prior to joining the trial.

Participation will last for between 12 and 48 months.

Participants will receive either Truvada or a placebo, to be taken before and after sex.

Although the IPREX study, published in 2010, found that tenofovir and emtricitabine taken once daily provided 44% additional protection from HIV among men who have sex with men who also receive a comprehensive package of prevention, a recent Stanford University study showed that PrEP only makes sense economically if prescribed to people at high risk, such as those with multiple partners.

Phil Curtis of AIDS Project Los Angeles said more research is needed to measure the effects of the approach in the real world. In San Diego, researchers plan to use text messages to remind people to take their pill. In Los Angeles, the level of drugs in participants’ blood will be regularly measured.

For a timeline of all HIV prevention trials see: www.avac.org/ht/d/sp/i/33230/pid/33230

Virgin Care, part of Richard Branson’s Virgin Group, continues its expansion into sexual healthcare with a new contract to run community health services in parts of Surrey. They recently won contracts in Sussex and Milton Keynes. The £500 million deal with NHS Surrey includes providing sexual health services. Virgin Care also has contracts in Teeside for GUM (genito-urinary medicine) services.

The Virgin Care contracts have caused concern in some quarters. Under the new Health and Social Care Bill, sexual health will be the responsibility of local authorities while HIV treatment and care will be the responsibility of is a special commissioning sector answering to the NHS Commissioning Board.

“A real issue is when sexual health services are put out to tender without proper regard to the positive impact on HIV-related care,” says Professor Jane Anderson, HIV consultant at Homerton University Hospital in London, and Chair of The British HIV Association (BHIVA).

“Sexual health services and HIV services often share the same locations and staff; because providers cohabit in the same location, these contracts could lead to a fragmentation of services, which should be integrated. For example HIV health advisers will operate under different management than the rest of the HIV team. I’m worried about the potential consequences,” says Anderson.

In February GUM services at James Cook University Hospital in Middlesborough moved into the community to the North Ormesby Health Village and the Redcar Primary Care Hospital. GUM services at University Hospital of Hartlepool will move to a location in the town centre. This followed the contract for sexual health services across Teeside being awarded to Assura Stockton LLP, a partner with Virgin.

Sexual health and contraceptive services in Milton Keynes were contracted out in April to AML Care Ltd, a Virgin Care company. It is understood that BHIVA is seeking a meeting with Virgin executives to outline their concerns. www.baseline-hiv.co.uk 09

Chris O’Connor

news: UK

Benefit Reviews Using GP Evidence Failing PLWHA

The review programme for people currently receiving Incapacity Benefit and Disability Living Allowance (DLA) is causing concern in the HIV community. Kathryn Dombrowicz, Director at River House Trust in west London says that many older, long-term survivors living with HIV,are living in fear of what the future holds.

The reviews, which started this year, often use GP evidence, which, it is claimed, is often poorly informed on the realities of living with HIV, although HIV clinicians have been generally highly supportive of their patients says Kathryn.

At the recent British HIV Association Conference in Birmingham delegates heard from Dr Fiona Lampe who looked at 2,175 people living with HIV - over a quarter were found to have a depressive disorder.

The 2.14 million people who previously claimed Incapacity Benefit, are slowly being processed through a new system that determines if they are eligible for the new sickness payment, called Employment and Support Allowance, or if they should be looking for work. Next year Disability Living Allowance will be replaced by a Personal Independence Payment.

Claimants must undergo a Work Capability Assessment, (WCA) carried out by private company Atos, that tests their physical fitness as well as their mental skills.

Official figures show that more than half of recent claimants (57 per cent) were deemed Fit For Work and so ineligible to claim sickness benefits.

But 40 per cent of these judgments are being appealed.

The National AIDS Trust (NAT) report, ‘Unseen 10 Spring 2012

Disabilities, Unmet Needs’ found that the barriers to work experienced by people living with HIV, such as severe immune deficiency, side-effects of treatment, depression, pain and fatigue are not fully taken into account by the WCA. More than 10% of people accessing HIV treatment in the UK claim Disability Living Allowance (DLA), to help with the extra costs associated with living with a disability.

Almost 150 new judges are being paid more than £400 a day to rule on cases brought by people who dispute the assessment that they are fit to carry out some work, denying them sickness benefits. Experts say that public expense would be lower if the initial assessments – carried out by the private company Atos Healthcare – were handled better. Four out of 10 cases are going to appeal, with a third of them successful.

A spokesman for Disability Rights UK added: “Appointing 150 new judges will not even clear the appeals backlog in a failing system.

The assessment process should be judged and improved instead. “Charities are ready and able to advise Government on how to ensure many more disabled people have their genuine needs identified first time round to avoid. “ “This would avoid the substantial waste of time and money spent on appeals - and the horrendous, stressful situation many disabled people and their families experience currently.”

For NAT publications ‘Unseen Disabilities Unmet Needs’ and ‘Fluctuating Symptoms of HIV’ see: www.nat.org.uk/Information-andResources/NAT%20publications.aspx www.baseline-hiv.co.uk

The more men you have, the more likely you’ll pick up an STI. So go for a check-up at least once every six months. For you. For him. For peace of mind.

To find your nearest clinic go to clinicfinder.org.uk

Chris O’Connor

news: global Barber Shops in Minnesota to Promote Awareness

WHO Recommends Treatment for Sero-Different Couples

In Minnesota, USA, an innovative HIV testing programme has recently been given the green light to expand. The “Seen on da Streets” programme has secured state funding to take culturally appropriate HIV/STI testing into urban communities. So far they’ve tested upwards of 11,000 young people.

The community health coordinator for north Minneapolis’ Fremont Clinic joined with the University of Minnesota’s Programme in Health Disparities Research, community health programmes, and local barbershops to host “Clipper Clinics.” The clinics, which offer free preventive health services and haircuts to anyone who comes in, “have proven extremely successful,” said Evans.

Brian Davis, proprietor of Brian D’s Old School Barbers, agrees. Happy that health care providers recognise the potential in the relationships black men have historically enjoyed with their barbers, Davis hosted the February Clipper Clinic, and called it “a huge success.” Evans maintains that discussing sexual health with people who “look like you and come from where you’re from” will best connect with the underserved, especially young black men.

The World Health Organisation (WHO) In mid’ April recommended that antiretroviral (ARV) treatment should be given to HIV positive partners in serodifferent couples (where one partner is positive and the other negative) even if the positive partner’s CD4 count is high and their immune system is still strong - given research showing that such treatment can prevent HIV transmission.

Dr. Bernhard Schwartlaender, Director of Evidence, Strategy and Response at UNAIDS welcomed the new guidelines. He said the recommendations “respond to the scientific evidence that has been accumulated over the past year,” which shows that when someone living with HIV is treated with ARVs, “the chance that the person would pass on the virus to a partner is dramatically reduced.” “About half of all people living with HIV who live in a regular partnership have a partner who’s not of the same status - a partner who is HIV negative, both for men and for women,” said Schwartlaender.

Medecins Sans Frontieres also praised WHO’s announcement, calling the guidelines a major advance in halting the global epidemic.

New Zealand Looks To Sustain Good News

New figures show a one third drop in new HIV diagnoses in New Zealand in 2011.

NZ researchers claim their assessment of community HIV prevalence showed that overall 6.5% of men who have sex with men in Auckland are living with HIV, with 21% unaware of their status. 1049 men were involved in the study – Otago University researchers used anonymous questionnaires linked to saliva samples to assess HIV prevalence and assumed HIV status.

In 2011 New Zealand recorded a big drop in new diagnoses – down a third after steady increases since 2000. ‘This is good news,’ said Professor Nigel Dickson, of the New Zealand AIDS Epidemiology Group; but he sounded a cautionary note, ‘the number of people diagnosed with HIV will depend on the amount of HIV testing. A drop in the actual infection rate on the basis of one year’s figures cannot be assumed – hopefully we will continue to see an decrease, together with higher testing rates.’

12 Spring 2012

gmi partnership ing Health Train

ainer service Our Health Tr ort & guidance provides supp sex life, and ur yo nd arou , with 1-2-1 th al sexual he ned to meet sessions desig our Health sit Vi s. ed your ne on our ar nd le Trainer ca e our website to se nues. schedule of ve

Counselling

The GMI Coun selling Service allows you th e chance to explore yo ur sexual behaviour with a trained professional, no matter wha t your HIV statu s is.

Mentoring

If you want to stay HIV negative and yet struggle w ith safer sex, ou r programme allows you to talk to anothe r gay man abou t your behaviour an d the issues which decide the kind of se x we have.

The GMI Partnership has been working with men who have sex with men in London around HIV prevention for over four years in places where you work, live or socialise. We believe everyone has the power to make the changes they want and our job is to help you make positive changes in your sex life whilst still having sex that you enjoy. We also work with many other agencies across London, so, whatever your needs we will be able to find help for you.

Email: info@gmipartnership.org.uk Tel:

020 7160 0941

Web: www.gmipartnership.org.uk

GMI Partnership services are free and provided by Londoners from diverse backgrounds, who are trained and supervised to work with men across the City.

GMI Partnership

The GMI Partnership is funded as part of the Pan-London HIV Prevention Programme. Š The GMI Partnership 2012 www.baseline-hiv.co.uk 13

Chris O’Connor

Burma Needs International Response

After being ruled by a military junta since 1962, Burma, also known as Myanmar held free elections on April 1st providing hope that the country’s health service, which is tatters, will see an increase in aid after the elections.

MSF (Medecins sans Frontieres) said only a third of the 120,000 people in need of antiretroviral drugs in Myanmar were receiving therapy, with up to 20,000 people dying each year due to a lack of treatment.

MSF Myanmar head Peter Paul de Groote said there was already an “unacceptable” gap in treatment and warned the situation would worsen without further funding.

“In Myanmar, we have a situation where there is willingness and capacity to scale up, so if more money would flow into the country we think, combined with better access, we could close that gap,” he told reporters in Bangkok.

The Paris-based aid agency said the cancellation of an entire round of support by the Global Fund to Fight AIDS, Tuberculosis and Malaria has left it with limited funds to treat a further 40,000 people.

“It is an unacceptable situation. You have to tell someone: ‘You are not sick enough, so please come back later, maybe then you’ll be sick enough and we can give you the treatment’, said de Groote.

Myanmar’s former junta prioritised military spending, leaving healthcare in tatters.

While a new quasi-civilian regime, which took power last year is likely to boost funding, MSF said it would be years before the health system is fully functioning.

The recent political reforms have sparked hopes of an increase in aid to the country — the least developed in the region and one of the lowest recipients of development aid in the world. MSF urged the international community to make tackling HIV and tuberculosis (TB) a top donor priority for the nation, which would need to spend around $560 per HIV patient every year on treatment.

14 Spring 2012

European Debt Crisis Turns Back The Clock

Greece and now Spain are making sweeping cuts to healthcare to reduce state debts and hard won gains made against HIV could be lost.

In March the Greek Health Ministry said it was issuing free condoms and syringes to injecting drug users in a bid to halt an alarming rise in new HIV cases.

In November 2011, Greece’s top health watchdog highlighted the fact that new HIV diagnoses had risen 52.7% up to October 2011, compared to 2010, with 800 new cases. Between 2006 and 2010 new diagnoses among Greek injecting drug users had been stable at around 9-16 cases reported annually. During the first ten months of 2011 new cases among injectors sharply increased to 190.

In Spain 300 voluntary HIV organisations have requested a meeting with the Ministry of Health following public spending cuts, which they say will threaten services. Activists fear that the loss of a national HIV/AIDS plan -with budgets devolving to state level - will be a backward step in the prevention and treatment of HIV. Ruben Sanchez coordinator of the Health and HIV section of FELTGB the Spanish, Gay Rights group, told BASELINE that a public demonstration by the HIV groups in Spain was being planned.

Ferran Pujol Roca, Director of BCN Checkpoint in Barcelona told BASELINE, ‘Recently a decree went into effect that leaves undocumented immigrants without health care. It is outrageous besides ignoring the negative effects it will have on public health.’

In one town, Vigo, in North West Spain, the only dedicated HIV service,”CCanvihar” closed in March. Luis Morana, a specialist in HIV at Meixoeiro Hospital in Vigo told local El Pais news that there had been an increase in HIV cases and that new diagnoses had shifted from injecting drug users to people acquiring HIV sexually.

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bASeD ON The ORIgINAL CONCepT by LegeNDARy DIReCTOR AND ChOReOgRApheR jeRRy MITCheLL, TO beNeFIT bROADwAy CAReS/eqUITy FIghTS AIDS 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

UK Government Agrees Free HIV Treatment for All The Government has agreed to provide HIV treatment for undocumented migrants on the NHS – Yusef Azad, Director of Policy and Campaign at NAT (National AIDS Trust) talks to BASELINE about how this key success was finally achieved…

Can you tell us a bit about the background and history to HIV treatment being chargeable for some people in the UK? For many decades, it has been the case that NHS treatment – usually of course free for everyone in the UK at the point of need – could be charged for in certain circumstances and for certain people.

In particular, people visiting the UK but not living here were meant to be charged for the treatment they received. There was an exemption from charges in relation to infectious diseases such as STIs or TB because it is important for public health that such diseases are diagnosed and treated as soon as possible, and charges might deter people from getting tested and accessing treatment.

But two problems emerged. The first was that in 1989, not too long after the HIV epidemic began, the Government stipulated that HIV treatment, unlike all other STIs and infectious diseases, would not be exempted from NHS charges. It is unclear why the Government decided on this step – let’s remind ourselves that ARVs weren’t around then so they could only have been thinking of palliative care.

Perhaps the Government did not want to bear the significant costs of palliative care for desperate people coming from overseas – which was a misplaced worry, as we’ll come on to later.

The second problem was that NHS charges, 16 Spring 2012

which had originally been designed for people either temporarily in or passing through the UK, began to be applied to people who were actually living here but without a settled legal right to do so. This includes refused asylum seekers, visa overstayers and other undocumented migrants.

Until 2004 this was not much of a difficulty. The law stated that if you had been here 12 months you could access free NHS care whatever your immigration status. But in 2004 the law was changed and it was from then on the case that the 12 month residency status had to be ‘lawful’, at a stroke meaning that many people with HIV living in the UK but without approved immigration status did not have a right to access free treatment and care.

This tightening up of the rules was driven by an increasingly hostile atmosphere to migrants in this country and, in particular, newspaper claims that people were migrating to the UK with the specific aim of accessing free NHS care, treatment they were not able to access or afford in their country of origin. Whilst many HIV clinics did not in practice charge for care, over the years this became increasingly difficult as NHS management required them to do so.

Were people with HIV questioned and billed? What was the impact of HIV charges?

As time went on after 2004, overseas payment managers were employed by the NHS to identify people who should be charged for care. NAT heard of a number of cases of people often very ill in inpatient wards being questioned about their residency status and told they would be charged.

People were sent bills for many thousands

of pounds for their treatment, money they were quite unable to afford since they were not allowed to work and were in most cases destitute. These bills were often pursued by private debt recovery agencies and accompanied with legal threats. The result in some cases was people disappearing from care with serious consequences for their own health and also for public health because of increased risks of onward transmission.

Equally serious was the impact on willingness to test. The charges created confusion and fear amongst many people, especially in African communities, and deterred people from testing whether or not they were in fact chargeable for their care. The test might be free but what was the point if treatment was chargeable? Government policy was contradictory – aiming to reduce late HIV diagnosis in African communities whilst putting in place charges to deter people from approaching the NHS for diagnosis and treatment.

Why is free treatment for HIV so important?

Of course HIV treatment is essential for the person living with HIV to keep them alive and well.

Access to HIV treatment is therefore linked to the right to life and the right not to endure inhuman or degrading treatment. There is also a right to the highest attainable standard of health which the relevant UN body has made clear should apply to all migrants as much as anyone else.

But the argument, which clearly was most persuasive for the Government to change the rules was the harmful impact of charging on public health. It makes no sense to have a policy which is meant to put off people from getting tested and treated for an infectious disease – the more an www.baseline-hiv.co.uk 17

infectious disease such as HIV is undiagnosed the more it will spread. And new transmissions mean greater costs to the NHS far outweighing the cost of treating those few chargeable migrants.

This public health argument was clinched by the increasing and overwhelming evidence of ‘treatment as prevention’. The fact that someone on treatment with an undetectable viral load approaches being non-infectious underlines how providing treatment to those who need it is a key prevention approach.

What did NAT do to bring about change?

NAT was engaged on this issue since 2004 when the Government consulted on extending these charges to GP surgeries. We successfully worked with a wide range of organisations within and beyond the HIV sector to make the case against such a move. We also developed arguments around the harm HIV charges were currently doing to our national response to the epidemic, sharing ideas with other colleagues in the HIV sector and ensuring through our HIV Policy Network that as many organisations as possible spoke with one voice to the Government on this issue whenever there was an opportunity.

The fact that over eight years as a sector we all refused to accept HIV charges but rather continued to campaign is a tribute to the hard work and commitment of a lot of different organisations and people – and it shows how if you keep at something hard and long enough in policy work, with both the ethics and the facts on your side, you can win through in the end.

NAT gave evidence on the issue to a number of parliamentary committees, including the Joint Committee on Human Rights, the Health Committee and the recent Lords Select Committee, and in our report ‘The Myth of HIV Health Tourism’ rebutted one of the most common arguments for charges – that they were necessary to stop people with HIV migrating to the UK for treatment. We worked with HPA data and other research to show 18 Spring 2012

that there is no evidence that this occurs – the problem is the opposite, migrants with HIV being reluctant to find out about their status and access healthcare.

Under the last Labour Government we worked with peers in the House of Lords to put down an Amendment to exempt HIV from treatment charges – the debate on that Amendment pushed the Government to undertake an internal review of the case for providing HIV treatment freely to all who live here and need it. NAT along with THT and African Health Policy Network and, very importantly, The British HIV Association provided evidence for that internal review. Then during the passage of the Health and Social Care Bill NAT again approached a member of the House of Lords, Lord Fowler, and asked him to move an Amendment to exempt HIV from charges, which he agreed to do.

Lord Fowler, NAT, and BHIVA all made extended representations to the Department of Health on the need for the change, and many peers also supported Lord Fowler’s amendment, including Baroness Gould. This combination of support from peers, the scientific and medical opinion of doctors, the united voice of the HIV voluntary sector, all came together to tip the balance - and we should not forget to praise the decision of Anne Milton, the Public Health Minister, and her colleagues for taking this decision.

When will this welcome change come into effect?

The Government has committed to change the law early this summer and has stated the new rules, providing free HIV treatment for those who need it and who are living in England, will come into effect in October 2012. Until then anyone without lawful residency status may still be charged for treatment. More information on treatment charges and the rules can be found on the NAT website at www.lifewithhiv.org.uk/immigration-andasylum

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.

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alere.co.uk 19

Ageing disgracefully?

Mary is 69 and has been living with HIV for 15 years. She contracted HIV from a long-term partner who’d been unfaithful and died from AIDSrelated dementia. Despite being convinced he was aware of his HIV status, she is sanguine about her diagnosis “I don’t think he deliberately infected me, I think he was in denial about his diagnosis.

It was my fault for allowing him to persuade me to stop using condoms. But HIV has radically transformed my life. My business fell apart and I was diagnosed with HIV brain impairment in 2002.

I had a breakdown soon after.”

Mary is not alone. An increasing number of women are contracting HIV over the age of 50.

With advances in treatment, there are now more women living with HIV who are over 50. The latest data from the Heath Protection Agency (HPA) indicates that in the UK there are 1,502 women with HIV between the ages of 50 – 54, and 1,404 over the age of 55. More than 200 women were newly diagnosed HIV positive in 2010- a 13% rise on the previous year.

‘If you’re older and single, it puts more pressure on you. You can’t share what you’re going through.

I think a lot of older women living with HIV get their confidence knocked, particularly if they don’t have a partner.’

I asked some women living with HIV why they felt that woman are contracting the virus over the age of 50. Mary thinks that at that age women are coming out of long-term relationships and 20 Winter 2012

have started dating again. They don’t need to use condoms to protect themselves from pregnancy and don’t think about the need to use condoms to protect themselves from HIV. Veritee agrees: “Many of the women I know who contracted HIV over 50 were divorced or separated from a longterm partner. When they were last single HIV didn’t exist as far as they knew. We knew about gonorrhoea and syphilis, but they were curable conditions. There is a significant lack of knowledge about HIV in older people.”

“The evidence may be anecdotal, but lots of my peers have problems. I think early menopause is very common for women living with HIV. I think my eye-sight has certainly got worse since HIV.” Many of the women I spoke to are concerned that HIV speeds up the ageing process. Veritee said, “The evidence may be anecdotal, but lots of my peers have problems. I think early menopause is very common for women living with HIV. I think my eye-sight has certainly got worse since HIV.” A number of studies have indicated that people living with HIV are getting health conditions associated with ageing like heart disease and stroke, loss of bone density and cognitive decline at a younger age than the general population. One study by the National AIDS Treatment Advocacy Project (NATAP) reported that 80% of HIV positive women felt they were ageing prematurely compared to less than 20% of men.

Studies have indicated that women with

Susan Cole

Veritee’s Story

Veritee Reed Hall is 59. She contracted HIV from her husband nine years ago and was diagnosed HIV positive aged 55. Unlike many of her peers, Veritee was very much aware of HIV. “I ran HIV awareness workshops back in the 90s and was tested for HIV regularly up to the menopause, but I never really thought that HIV would affect me – I was happily married and faithful to my husband.”

Veritee’s husband had not been faithful and was less conscious of HIV. “I think my husband would have used condoms to prevent another woman getting pregnant, but he got HIV from an older woman. He wasn’t aware of HIV despite me knowing so much about it – couples don’t necessarily have the same level of awareness.”

Veritee’s husband became very unwell; “literally dying before my eyes.” He was eventually tested for HIV and the test came back as positive. His CD4 count was 8 and he was immediately hospitalised.

Veritee’s HIV test also came back as positive. She didn’t have any opportunistic infections but still started treatment later than was recommended so she could focus on looking after her husband.

Veritee stayed with her husband, unlike the majority of women she knows who contracted HIV from a long-term partner.

Veritee feels that HIV has speeded up the ageing process for her. “My skin is more papery.

Before my HIV diagnosis I always looked younger than my age, but not now. I have high cholesterol and high blood pressure. I might be wrong but I think HIV speeds up ageing. I tell the clinic what I think but they say these changes are just because of my age. But I know things have changed about my body because of HIV.” Veritee is a voluntary Support Worker for Kernow Positive Support (KPS), the only HIV support service in Cornwall. It runs a respite centre that is open to anyone living with HIV in the UK. http://kernowps.co.uk/ind.htm

Veritee with her husband Barry www.baseline-hiv.co.uk 21

HIV are more likely to experience the onset of early menopause than HIV negative women and that the symptoms may be more severe.

Early menopause may also impact on the risk of experiencing heart disease and stroke, diabetes and osteoporosis. Women with HIV appear to be at greater risk of developing osteoporosis (low bone mineral density), but there is some debate as to whether this is caused by HIV itself or by the medicines used to treat it. Strategies to help prevent osteoporosis vitamin D and calcium supplementation and weight bearing exercise as well as avoiding other medications associated with decreased bone mineral density. HRT (hormone replacement therapy) can also minimise the risk of osteoporosis, although its long-term use is becoming controversial.

‘It is important before taking HRT, if you are a women living with HIV to discuss other medications you are taking with your doctor as it may affect drug levels of some HIV medications.’

It is important before taking HRT, if you are a women living with HIV to discuss other medications you are taking with your doctor as it may affect drug levels of some HIV medications.

As women age they may also be taking other medications, such as drugs for high blood pressure and diabetes.

Women living with HIV may face other challenges as they age, such as emotional or psychiatric issues. Mary developed HIV brain impairment and subsequent emotional problems after her HIV diagnosis at 53. “I was prescribed anti-psychotic medication in 2006 and developed 22 Winter 2012

severe side effects from those drugs.” HIV has also been associated with an increased risk of developing early onset dementia and Alzheimer’s disease.

Veritee indicated that many of the older women she knows who are living with HIV have issues around feeling lonely. “If you’re older and single, it puts more pressure on you. You can’t share what you’re going through. I think a lot of older women living with HIV get their confidence knocked, particularly if they don’t have a partner.”

Mary is very careful who she tells about her HIV status. “I only tell people I think need to know. I have one carer I’ve told I’m HIV positive, but not the others. It depends on the type of person they are and if they’re likely to tell anyone else.”

Starting a new relationship may be more of a challenge for older women living with HIV. Mary talked about this; “I’ve only had one partner since my HIV diagnosis, but I didn’t tell him about my HIV status and always insisted on using condoms.

The relationship only lasted a couple of years.”

Veritee feels that lots of older women living with HIV she knows have trouble starting relationships.

“All of the older women I know who contracted HIV later in life got it from a partner in a long-term relationship, not from a one night stand. Lots of them don’t stay with the person they got HIV from, they leave them and suddenly they’re on their own. It’s hard enough for a woman in her 20s, 30s or 40s who contracts HIV, but for a woman in her 50s or older it can be much harder to meet someone.”

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

focusing on: - healthy eating for babies, toddlers and kids with hiV

- Dietary basics with Clare stradling, hiV dietitian

- a trip to the market on ÂŁ35 - what is the portfolio diet?

- back to basics with quick Available at

and simple whole foods

- the food Chain’s services - healthy living advice from waverley Care, edinburgh

- Come (hiV) dine with me

8 sh o rt f i l m s a b o u t e at i n g well with hiV This project is produced by BASELINE and supported by ViiV Healthcare. Printing provided by ViiV Healthcare.

Activism:

Where have we come from, where are we going?

Twenty two years ago, in 1990, Whitehall was brought to a standstill by HIV activists staging a “die-in” outside the offices of the Department of Social Security to protest about inadequate disability benefits for people with AIDS. So when, last year, HIV organisations encouraged people to join Disability Rights campaigners marching in London to protest at benefit cuts, it must have seemed, to those who remember the early years of HIV, like an echo from the past: a call to a form of protest activism long disused in the HIV sector.

HIV activists interviewed last year for a study of HIV activism in the UK all agreed that HIV activism has changed from a confrontational approach in the early days, which was appropriate for the time, to one based on engagement and involvement. As one activist said, “people won’t listen to you these days if you rant and rave”.

What that study told us about how and why HIV activism changed will be the subject of two articles. In this, the first, we’ll look at HIV activism on social issues, mainly in the years before effective antiretroviral treatment (ART) arrived, when, in contrast to the United States, treatment activism in the UK was muted. The second article, in the next edition of BASELINE, will look at how, after ART’s arrival, involvement came to be the dominant approach, especially in treatment activism.

The social and political world in which AIDS and HIV first appeared was very different from today. For gay men, who initially bore the brunt of the AIDS epidemic, not only was homophobia widespread and socially acceptable in a manner almost inconceivable now, but discrimination against them was legal. Many of the first HIV activists had been active in the gay rights movement and brought to HIV activism the 24 Winter 2012

confrontational methods and tactics they had used to challenge discrimination; tactics that seemed appropriate given how closely the stigmatisation of people with diseases, particularly sexually transmitted diseases, resembled and overlapped with stigmatisation of homosexuality.

Initially activists in the UK, with the formation of the Terrence Higgins Trust, prioritised prevention – getting the safer sex message across, counselling people about risk, providing care, and trying to persuade the Government not only to respond but telling it how to respond to communities, such as gay men, and in an area – sexual behaviour – where it had no expertise and where it feared to tread.

Among people with HIV (PWHIV), in the absence of any treatment to prolong life, the initial focus was on quality of life, mainly through peer support. “Body Positive” groups were set up in many cities throughout the UK, initially by and for gay men but soon for women (Positively Women, now Positively UK), injecting drug users (Mainliners), people with haemophilia (The Birchgrove Group) and people with AIDS (Frontliners and, later, the UK Coalition). Primarily, these groups provided a “safe place” where PWHIV could give each other emotional support.

The scale of public alarm about the “threat” posed by PWHIV put huge pressure on the Government to introduce highly repressive measures such as mandatory testing to identify everyone with the virus, compulsory disclosure of HIV status and making PWHIV criminally liable if they passed the virus on to someone else. To HIV activists, all these measures would have been a completely unjustifiable restriction of the human rights of PWHIV. In 1988 they organised a candlelit

Rob James & Jonathan Grimshaw

march of ten thousand people through central London in support of the rights of PWHIV. Pragmatically, the Government was also afraid that using compulsion would send people into hiding and, in effect, drive the disease underground.

So the UK adopted a liberal approach to HIV, avoiding repressive measures, whereby everyone was informed about the risks and, so informed, was individually responsible for avoiding them. It probably helped that the Thatcher Government, with its ideological attachment to individual initiative rather than state intervention, was in charge at the time, but there has been, in western democracies, an underlying, long–term shift of responsibility for health away from the state and on to the individual.

The fear that HIV and AIDS would ‘cross over’ from the ‘high-risk’ groups (gay men, injecting drug-users, haemophiliacs and sex-workers) to spread rapidly among the general population spurred huge Government investment in public education campaigns, in medical and “community” care and in the HIV voluntary sector.

As HIV was so new and those it affected (generally young, previously healthy gay men) not part of the mainstream of people receiving care, it was self-evident that services would best meet the needs of PWHIV, and therefore use public money for that purpose most efficiently, if PWHIV were involved in designing them. The HIV sector promoted PWHIV and “service user” involvement both as a principle and as a guarantor of “good practice”. Representation and involvement of the people most affected by HIV in the development of Government policy was also an essential component of a liberal response.

Recognition by Government of the importance www.baseline-hiv.co.uk 25

of community-based organisations, combined with increased investment in HIV, resulted in a shift in the community-based response from ‘unambiguous voluntarism’ in the ‘80s to ‘service provision’ in the ‘90s, funded by contracts with local and central Government. Many of these organisations maintained a campaigning role, based partly on an understanding that knowledge and evidence gained through service provision gave campaigns particular weight with Government.

With the realisation, as the 90s progressed, that HIV was not going to cross over into the general population and with the arrival of effective treatment, public perceptions of the threat posed

by HIV diminished. Government money was withdrawn from many of the community and peer support groups that had sprung up to provide care. Many closed. As HIV became treatable, the threat to life, which underlay some of the most militant activism, was removed; die-ins became obsolete.

As HIV has remained a specialised, “highcost, low-volume” condition, affecting minorities outside the mainstream of society, part of the continuing job of HIV activism has been to make sure that, through endless reforms of the NHS and public spending, HIV continues to be properly funded. The HIV sector has needed to “punch above its weight” to ensure that the needs and rights of people with HIV are respected in policy and practice as Governments come and go. As well as the policy and campaigning work undertaken by organisations like the Terrence Higgins Trust, Positively UK and, outside London, The George House Trust, the UK has three national HIV organisations devoted solely to policy .

In retrospect it can be seen that, during the 26 Spring 2012

1990s, society was changing: multiculturalism, respect for difference and the aspiration to greater equality were starting to take root in British culture and politics. Government priorities and the human rights aspirations of HIV activists in areas such as protection from discrimination were to become aligned. In others, such as HIV treatment for immigrants, there would be conflict.

How English law on these issues developed in relation to HIV will be discussed in the next article.

It’s perhaps a reflection of how diverse HIV activism has been that, among people working, lobbying and campaigning on HIV issues now, there is little consensus on how to define it.

Interviewed for last year’s study, some preferred to describe themselves as a ‘campaigner’ or ‘advocate’. Others thought activism “involves engagement at the grassroots by people who are not paid to do it as a job”; reflecting perhaps an unconscious yearning for the ‘unambiguous voluntarism’ of the 1980s. “Die-ins” may have died out but all the interviewees felt that the concept of activism retained a strong sense of protestation, demonstration or aggressiveness and that this is much less pronounced in HIV activism now. Some saw this as a diminution of activism, others as an evolution to a more collaborative approach, but all agreed that things have changed since the arrival of ART. In the second article, we’ll describe how.

References & Further Reading i Where people act as dead to draw attention to complicity in AIDS mortality ii ‘Keep Taking the Tablets: HIV, Rights and Bio-Activism in the Post-ART Era’. PhD thesis

by Robert James, 2011 iii The National AIDS Trust, The African Health Policy Network and HIV Scotland

www.baseline-hiv.co.uk

Talking points A checklist for you and your doctor Talking points is designed to help you talk to your doctor about HIV treatment. Having the right information available to you and your doctor will help you get the best out of HIV treatment, and reduce the chances of problems developing in the future.

Not all HIV drugs are suitable for everyone, and some will work better for you than others.

By answering the questions you will be able to build up a list of important issues to talk to your doctor about, so that the treatment you receive is right for you.

ďƒœ www.aidsmap.com/talking-points

THT Hardship Fund is now up and running

All too often HIV and poverty go hand in hand.

An estimated 25,000 people living with HIV in the UK experience problems day-to-day due to lack of money.

With funding secured from the Elton John AIDS Foundation, the M.A.C AIDS Fund and the Monument Trust as well as this month’s Walk for Life Fundraising event, Terrence Higgins Trust recently relaunched the Hardship Fund for people living with HIV in the greatest need.

Since its relaunch in January, the fund has received over 545 applications for financial support.

BASELINE recently met with Ola Opoosun who took up the post of Head of Hardship back in September 2011. Her main purpose is to support clients who need financial assistance access it and work with referral agencies to ensure people are being given appropriate advice about debt or housing issues.

THT has established a network of around 50 referral gateways, with more joining next month.

These are mainly local HIV organisations, Citizens Advice Bureaus, or social services departments, to whom the funds are transferred on your behalf as an applicant. A full list of participating organisations can be found at www.myhivorg.uk or by calling THT on 020 7812 1682.

Using the Joseph Rowntree Foundation definition of poverty to determine eligibility for the various levels of assistance available, it’s very much the intention that the available funds will be prioritised to assist those in the greatest need.

The new Hardship Fund is split into three brackets: 28 Spring 2012

Necessity Fund Offering payments of up to £150 to those who need help with day-to-day essentials such as food, heating or winter clothing, bedding, toiletries, travel or bills.

This is primarily intended for people with no income at all or in the case of a single person, someone who survives on less than £80 per week, for people whose benefits are still going through review or people who receive NASS voucher support. The income bracket is slightly higher for couples and families applying for a grant.

Transition Fund Offering payments of up to £250 to those requiring one-off support during a major life change, such as being recently diagnosed HIV positive, a job search, moving to a new area, waiting for a new job to start, a start up grant, moving into retirement, training (recognised

by Job Centre Plus), if your benefits have been stopped or suspended, for respite care or if you have been refused a crisis loan. You can access this Fund once every two years.

It is still possible to use the grant to purchase white goods such as cookers or washing machines, but you’ll need to provide a pro forma invoice with details of the supplier and they can only be applied for if you have already been turned down by the DWP Social Fund and you are eligible to live in your accommodation for 12 months.

Family Fund Offering payments of between £100 to £250, where a parent and/or a child has HIV. The Family

Robert Fieldhouse

Fund is designed to support families to meet one-off expenses, similarly to the Transition Fund.

You can apply to this Fund once every two years.

If the need is specifically for a child, you would be expected to have made an application to the CWAC Hardship Fund in the first instance.

How can I assess if I am eligible for the Fund?

With your advisor you’ll need to work out your weekly income after your housing costs (rent/ mortgage) have been paid.

Where appropriate, THT would expect the referral agent to discuss all your possible options with you, for example applying to the DWP Social Fund for a grant before making an application to the Hardship Fund. And you’ll need to include any savings over £50 on the Hardship Fund application form.

THT can make a direct referral to the Food Chain if you live in London and are in need of food; you may well qualify for a two-week emergency food parcel.

Household

Necessity Fund

Family/Transition Fund

Single Adult

Income of £80 or below

Between £81 and £119

Couple no children

Income of £138 or below

Between £139 and £206

Single parent 1 child

Income of £108 or below

Between £109 and £161

Single parent 2 children

Income of £135 or below

Between £136 and £202

Single parent 3 children

Income of £163 or below

Between £164 and £243

Single parent 4 children

Income of £190 or below

Between £191 and £284

Couple 1 child

Income of £166 or below

Between £167 and £247

Couple 2 children

Income of £192 or below

Between £193 and £288

Couple 3 children

Income of £221 or below

Between £222 and £330

Couple 4 children

Income of £248 or below

Between £249 and £371

Though THT take your weekly housing costs into consideration when assessing an application your utility bills such as gas, electric, water are not taken into account. General debt is also not taken into consideration, but rent/mortgage arrears are as well as any repayments you are making to the Social Fund. ‘Debt is a long-term issue unresolved by giving someone a one off payment,’ Ola told BASELINE.

I wanted to know if people on Disability Living Allowance qualify for the Fund; ‘it depends, it’s possible they could fall within the Transition or Family Fund, but it would depend on the amount of benefit received and any housing costs paid,’ Ola told me.

And does THT see any point in the coming year when the Hardship Fund is likely to run out of money and need to close temporarily in order to www.baseline-hiv.co.uk 29

Robert Fieldhouse

balance the books? The answer was a resounding, ‘No’, as ‘the money is being equally assigned month by month.’

THT’s Chief Executive Sir Nick Partridge OBE, told BASELINE, ‘Poverty is a major issue affecting many people with HIV. Research tells us nearly one in three have ongoing problems getting enough money to live on.’

He added ‘Grants made through the Hardship Fund might be used to help someone with basic requirements like food or winter clothing. But perhaps just as importantly, they will give Terrence Higgins Trust and our partner agencies a stronger link with those in greatest need of support, allowing us to work closely with them in the longterm to improve their situation.’

So who is likely to benefit from the new Fund?

Ola discussed with me two recent cases; the first, a Black African asylum seeker who has made an application to the Home Office for leave to remain on medical grounds. He is currently supported by NASS and is given a subsistence allowance of £36 per week. His health has deteriorated through the winter, due in part to a lack of adequate clothing and bedding. A £150 grant from the Necessity Fund ensured he was able to buy some warm clothing and bedding.

Another case concerned a White UK National, recently released from prison where he had gained weight and as a consequence his clothes no longer fitted him. His wife (who is also living with HIV) was due to start a job in eight weeks time and he had been refused a community care grant because it had been over six weeks since his release from prison. A grant of £200 from the Transition Fund ensured they were able to buy suitable clothes.

In the coming months THT is to develop a client participation group to help evaluate how things are going and identify how improvements 30 Spring 2012

can be made to the system. It’s also possible for you to appeal a decision if you think the decision is wrong.

Scott Gledhill from Leeds Skyline Service told BASELINE; ‘I have applied on behalf of 3 clients and received confirmation of approval within 2 weeks.

The cheque arrived the following week; all very efficient. It’s also possible to apply for the payment

by BACS, in which case you should expect to receive a payment within a week.’

Best of luck to those of you who apply and don’t forget to sign the form alongside the person who is referring you; otherwise the application form will be returned.

Finally, all monies raised from this year’s Walk For Life are to be ring-fenced to go directly into hardship payments to people living with HIV. So if you’ve not yet signed up for the Walk For Life, there’s never been a better time to do so. Register at www.walkforlife.co.uk

To learn more about how to make an application to the Hardship Fund please call 020 7812 1682 or email hardshipfund@tht.org.uk Anyone who is living with HIV and in financial difficulty can call THT Direct on 0808 802 1221 to receive free and anonymous advice.

CWAC also operates a Hardship Fund for families affected by HIV; www.cwac.org/howwehelphardship.htm Applications can only be made to it through a third party such as a social worker CWAC are currently offering financial support every six months. For more information contact Paulina Bravo (CWAC Hardship Services by telephone on 020 7033 8620 or email hardshipfund@cwac.org www.baseline-hiv.co.uk

31

Major new study supports rapid CD4 counts

The nationally acclaimed Mortimer Market Centre, which provides sexual health services in Central London, has just published the results of its evaluation of the new Alere PIMA™ CD4 analyser. The paper, which appears in the prestigious British Medical Journal (BMJ) reports the findings of a comprehensive study that compares PIMA rapid point-of-care CD4 counts with laboratory reference methods. It also looks at patient experience of the new test and discusses the benefits of providing immediate results while people are still in the clinic.

CD4 monitoring is a key aspect of managing both the newly diagnosed and people with chronic HIV infection. An important indication of immune response, it is essential for guiding the initiation of antiretroviral therapy (ART) and monitoring patients during treatment. A CD4 count of less than 350 is the threshold at which treatment should begin for the majority of people living with HIV in the UK, and regular measurement is essential.

At the moment all CD4 tests are performed in specialist laboratories meaning that people need to revisit the clinic to receive and discuss their results. Delays in adequate assessment and the initiation of treatment can have clinical implications and waiting for feedback adds to patient anxiety and uncertainty.

Dr. Paul Benn and his team at Mortimer 32

Spring 2012

Market Centre conducted the PIMA evaluation last year, initially validating the test with both newly diagnosed people and those with chronic HIV. He then extended the scope of the study to include acutely unwell patients who attended a ‘walk in’ (no appointment) service at the clinic.

In total, 283 tests were performed in the trial covering a wide range of ages, ethnicity and HIV clinical status. All patients gave verbal consent and the vast majority (83%) found the rapid test highly acceptable. PIMA results were available in 30 minutes enabling clinicians to discuss them during a single visit and make appropriate and timely treatment/management decisions.

The evaluation concluded that the PIMA point of care CD4 “provides an immediate result and is highly correlated with the laboratory CD4 in our setting.” Rapid results proved beneficial in terms of managing and treating HIV and associated opportunistic infections. Patients, particularly the newly diagnosed, were also relieved to know their count without unnecessary delays.

The portability of the new PIMA test offers the opportunity for it to be used in outreach settings, for example in GP surgeries as well as routine clinic settings, enhancing new patient pathways and speeding up access to appropriate HIV care.

This article was supported by Alere, www.alere.co.uk

Robert Fieldhouse

1. Fingerprick sample

Are you struggling to afford food?

Rising food prices have made it more difficult for many people to provide appropriate food for themselves and their families.

Luckily, The Food Chain’s Eating Positively cookery and nutrition classes are here to give you practical tips on how to make your money go further and provide tasty recipes and inspiration for eating well on a budget.

2. Wait 20 minutes

Join us at an introductory class to watch a cookery demonstration, share a free meal and improve your cookery skills with our friendly, professional chef.

The classes are fun, free to attend, and are available to anyone living with HIV (or their carers) in London.

If you are struggling to eat well, please ask your doctor, nurse, dietitian, social worker or HIV support organisation to refer you to The Food Chain.

3. Receive your CD4 count

You can contact us on 0207 843 1800 for more information or see our website www.foodchain.org.uk

Charity Number 1003014

www.baseline-hiv.co.uk

Want to join the Service User Group for North/West London?

on youR mARKS… Fancy joining us forSEt…StRIP! a night out?

GEt 2012 On our recentA SPORTING BASELINE weekends we’ve SPECTACLE OF SASS & CLASS received feedback that while people enjoy going S U N DAy 2 S e p T e M b e R – 9. 3 0 p M & M I D N I g h T T I C K e T S F RO M £ 4 0 they’re often at a loss for something to do of an phONe 020 7734 5683 V I S I T M A DT RU S T.O Rg . U K evening.

Join us as we help The Make a Difference Trust raise vital funds with the sexiest show you are ever likely to see.

Put Sunday 2nd September in your diary. 9pm start at the Café de Paris, London.

Contact for more details and application david@baseline-hiv.co.uk if you’d like to join our party. Visit www.baseline-hiv.co.uk for more details.

L I m I t E D AvA I L A b I L I t y b o o K n oW

C A F é D E PA R I S , L o n D o n OV e R 18 ’ S O N Ly

NHS North West London would like to hear from: * people living with HIV *people who have been recently diagnosed and those who have been diagnosed for some time * people from all walks of life *people who already receive HIV treatment or services in the four boroughs *people with HIV and other health conditions * carers of people with HIV * people of all ages (18+).

A thEAtREmAD PRoDuCtIon In AID oF thE mAKE A DIFFEREnCE tRuSt

@MADTRUST

The MAKe A DIFFeReNCe TRUST

bASeD ON The ORIgINAL CONCepT by LegeNDARy DIReCTOR AND ChOReOgRApheR jeRRy MITCheLL, TO beNeFIT bROADwAy CAReS/eqUITy FIghTS AIDS

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

BASELINE Readers’ Survey

BASELINE is carrying out a readers’ survey to help us better provide you with the information you want and need. Please tell us what you like and don’t like about the magazine, what you’d like to see and what we can do to improve it.

The survey is available at: www.baseline-hiv.co.uk 34 Spring 2012

Applications are particularly welcomed from - Women - People who live in Westminster - People Under 30

Have your say and help shape HIV services.

Be part of a group that will: * get involved in decision-making about HIV treatment and support services * share views and experiences with people who have HIV and their carers * work alongside healthcare professionals * be supported by the coordinator * receive refreshments and travel expenses.

For more information on helping to improve HIV services in Hammersmith &Fulham, Kensington & Chelsea, Westminster and Ealing contact: Gordon Mundie 07766 818209 or email: gordon.mundie@inwl.nhs.uk

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

Email: editor@baseline-hiv.co.uk Robert Fieldhouse Join the European AIDS Clinical Society

The EACS is currently developing and improving its membership services.

As from 2012, anyone professionally involved in HIV/AIDS research, care, prevention and control can become a member of EACS and ultimately represents his/her region at the EACS General Assembly.

Discount fees are available for allied professionals.

Member benefits include: - Free EACS newsletter to keep you updated of upcoming courses, conferences and important deadlines - Discount fare for the journal “HIV medicine” - Free eBook access to Touch Briefings ‘European Infectious Disease’ Volume 5 Issue 2 - Voting rights in the upcoming EACS Regional Committee elections (June 2012).

For more information right now please write to members@europeanaidsclinicalsociety.org

Want to explain HIV to your kids?

Order your copy from www.aidsmap.com

Medikidz www.medikidz.com produce a range of medical info for kids. They produce a number of comic books dealing with a range of health issues. They’ve recently published a comic about HIV and its treatment.

To get your free copy email hiv@janssen.co.uk

Hep C positive? Fancy a health day?

The Hepatitis C health day is a free one day workshop run by people with experience of living with the virus and specifically designed to help people who have hepatitis C and have chosen not to do treatment, for whom treatment is contra-indicated or for whom treatment has failed. But anyone with or affected by hepatitis C is welcome.

The dates are Saturday 26th May 10.30am-4.30pm and Saturday 23rd June. Both are held in London.

For more details contact Catherine Corr on 0207 089 6220 or email catherine.corr@hepctrust.org.uk www.baseline-hiv.co.uk

35

BASELINE weekend in Snowdon

For many of us this was our first BASELINE weekend and I’m sure I speak with a common voice when I say that I hope it won’t be our last.

The sense of camaraderie generated in so short a space of time was remarkable and priceless.

Added to this was the magnificent setting above the Conway Valley in Snowdonia. Our home for the weekend was a picturesque farmhouse adapted into a youth hostel, but without destroying any of its basic character and retaining many original features. Amongst these were two fireplaces in which live fires provided a cosy, warm backdrop to evening meals and conversation. Although we were blessed with brilliant, hot sunny days, it is surprising how quickly the heat evaporates in the evenings when you are high up in the hills.

Having declined to take on the role of lumberjack to collect wood for the open fire, I felt obliged to become the fire lighter when it was pointed out that there were bags of coal for our use. Lighting the fire in the main room on Friday night was a bit of a challenge with only newspaper and damp twigs for kindling. Nonetheless, with a little help from my newly made friends, a roaring blaze was eventually achieved. The splendid buffet meal created from the amazingly diverse contributions brought by each person was savoured and enjoyed as we all chatted and gradually got to know one another better.

Rhiw Farm YHA Rowen is off the beaten track at the top of a steep hill and took some finding.

It was only when we came to the end of a gravel road high in the mountains that we realised we 48 Spring 2012

must have missed the turning. Fortunately, on retracing our route, a younger pair of eyes than mine spotted the hostel signs on a post almost hidden by ivy. Fears that we would have to leave the car at the bottom of the hill and carry our belongings to the top evaporated when we saw the hostel sign on the side of the farmhouse.

The journey was at times reminiscent of an Alton Towers white-knuckle ride, but never once did we lose faith in the ability of Robert to get us to our destination safely.

“The idyllic, remote location brought peace and tranquillity.”

This idyllic, remote location brought peace and tranquillity, which must have contrasted sharply with the noisy urban environments from which most of us had come. It was magical to fall asleep to the distant sound of baaing sheep and bleating lambs. Well, that was until the snoring kicked in. In a dorm with five people, we had a chorus of three snorers; not always at the same time or at the same volume, mercifully, and with the dawn chorus, they all simultaneously stopped. Bliss!

Whilst most of us were well equipped for walking in the Welsh hills, none of us (apart from the leader) knew exactly the challenging trek ahead. Getting up to the highest point was hard work, but well worth the effort for the breathtaking view from the top ridge of the Menai Straits and Anglesey. We saw different kinds of heather and mosses unique to the region as well as birdlife

Maurice Greenham

Maurice Greenham with David Rowlands

and small herds of wild Welsh mountain ponies, including mares with young foals. Magic!

After a welcome break when we ate our packed lunches supplemented with fresh fruit and leftovers from Friday’s meal. We then set off in a circular route back towards Rowen, passing the sight of a wartime air crash and some ancient standing stones. The terrain was rough at times and far from even. At one point we had to descend a valley to cross a mountain stream then climb up the banks on the other side. It was after crossing a wide stretch of marshland and uneven tussocks that some of us began to feel the strain. However, it was the final steep descent, which proved the most disastrous for me. My knees gave way! Each step was agony. Tom loaned me a walking stick, but this didn’t seem to help. It was David Rowlands who proved to be my ‘knight in shining armour’; by taking my weight on his shoulder he helped me off the hillside. Prince William and the RAF mountain rescue team couldn’t have done a better job. Once on the road I was fine and able to make my way up the hill un-aided, whilst most of the group went in the opposite direction to the village pub.

A hot shower, a couple of paracetamols and nice long nap soon put me to rights so that I was able to help Gareth, the other David and Andrew with preparations for the evening meal. In fact my principal task was to light a fire. Again! As we were to sit down at tables laid out across the main room, the fire would have to be lit in the parlour.

Fortunately, the chimney for the front room had a better draw of air and I was also given some

firelighters. By the time everyone had got back from the pub, there was a nice steady glowing coal fire, which kept us warm for the revealing after dinner conversations sparked off and encouraged

by Joel’s imaginative stimuli.

That night, the snoring chorus in the dorm was greatly subdued. It could have been tiredness or the effects of alcohol…probably a bit of both, but the resulting sound was more like a soft, calming purr than the previous night’s louder, harsh, disturbing snorts and roars.

On Sunday after breakfast, we declined the suggestion of another mystery walk, opting instead to enjoy the delights of Llandudno. It was a good choice. Over cups of freshly ground coffee, we were able to appreciate the town’s cleanliness and the efforts that have been made to renovate its charming Victorian and Georgian buildings, before taking a stroll along the promenade towards the pier. Finally, we rounded the weekend off with a delicious meal at a nearby restaurant.

What made the weekend special for me was the wonderful supportive company, always willing to share experiences and knowledge about HIV as well as life’s ups and downs in general. Apart from Robert from BASELINE and Gareth from Large Outdoors www.LargeOutdoors.com who made the event possible, I would like to thank Andrew and David Rowlands, not only for assisting me off the hillside, but also because of their exceptional kindness towards me which lifted my spirits immeasurably leaving me elated for a long time after. www.baseline-hiv.co.uk 49

12 Points For Make a Difference Trust’s West End Eurovision The Make A Difference Trust celebrated its 21st year in April by creating what has to be the highlight of the West End’s calendar.

For the 5th year stars of ten of London’s top musicals battled it out for the most coveted trophy in London’s Theatre Land.

West End Eurovision offers the cream of West End musical theatre (think Wicked, Mamma Mia, Billy Elliot) the chance to delve into the entire Eurovision back catalogue, pick a tune, rehearse it to perfection and compete with rival musical stars to be to be crowned West End Eurovision Winner 2012.

On the judging panel were Stefanie (Jennifer

“she’s gorgeous” Hart) Powers who took time out from starring in On Golden Pond to look “for flesh.”

DJ Tony Blackburn avoided temptation to parody Simon Cowell, saying, “it’s better than the actual Eurovision, cos at the end of the night someone from this country actually wins,” Kerry Ellis, the lady who now sets the bar in London musical theatre proved herself to be a powerfully insightful judge.

True to Eurovision form, when glitches occur it only adds to the fun. When the mikes went down during the Les Mis version of Celine Dion’s 1988 winning entry Ne Partir Pas San Moi the audience simply demanded an encore and it rightfully brought the house down.

Pictures Kate Jenkins & Heloise Bergman

Over 450 people were involved in putting the show together which was streamed live on the internet and watched by a 2,000 strong audience at London’s Dominion Theatre.

If you never made it this year, watch the winning video indent by the cast of Les Mis A.R.S.E.D Actor’s Rags to Sequins Eurovision Dream to get a taste of what you’ve missed. www.youtube.com/watch?v=GWT7IUQ5oCI The cast of Sweeney Todd took this year’s trophy with a rendition of Michael Ball’s 1992 entry One Step Out of Time. Ball is the star of Sweeney Todd. He pitched up on stage to promptly slit the throat of his nubile replacement and take the

number to its peak. “Get over it Michael,” co-star Imelda Staunton shouted, “it was 20 years ago.“ Stefanie Powers got her pound of flesh and blood.

We’re sure that oodles of cash were raised on the night but went to print six hours after the end of the show. We can tell you we’ve booked our places at West End Bares in September on the strength of what we saw.

Kerry Ellis closed the show on a high at 2.30am to a standing ovation for Queen’s Somebody to Love.

Congratulations to everyone involved. We are looking forward to next year.

Robert Fieldhouse

ANNOUNCEMENT

6th Annual Conference of the

Children’s HIV Association (CHIVA)

IF ONLY WE KNEW …

Friday 18 May 2012 Lakeside Centre · Birmingham Introduction

Key conference topics:

CHIVA is delighted to announce its 6th Annual Conference, which will be held at the Lakeside Centre in Birmingham.

▶ Should HIV diagnosis be disclosed on the first appointment? ▶ New insights into when to start HIV treatment

Ms Sally Scott has kindly agreed to serve as the Local Host for this event.

▶ Vaccine-preventable infections and immunology update

Registration

▶ NCB report on adolescent transition

Rates and details can be viewed via the CHIVA website.

You can register by using the forms published in the Second Announcement.

▶ PENTA trials and UK research update ▶ New drugs in preventing MTCT and choice of PIs in neonates ▶ Antenatal antiretroviral therapy and prematurity ▶ Interactive difficult case presentations

CHIVA Conference Organiser: Mediscript Ltd, 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD Tel: 020 8369 5380 · Fax: 020 8446 9194 · Email: chiva@chiva.org

www.chiva.org

congratulates

Alina Dumitriu of Sens Positiv in Bucharest for her tireless work to support people with HIV in Romania

Dr. Laura Waters on her appointment as a HIV consultant at Mortimer Market Centre in London

Allan Anderson on his appointment as Chief Executive at Positively UK Will Harris on his appointment as Head of Media at Terrence Higgins Trust

Tim

Caution: telling others about living with HIV I didn’t think that having HIV would be an issue nowadays, especially within the gay community.

But believe it or not, after having told a couple of gay friends that I had HIV, our relationships with each other ceased to exist, not because of me, but because of them.

‘I still don’t have any answer why these friends shunned me after I told them I have HIV.’ One friend I had known in NYC for a long time.

He’d moved to London a year after I did (in 2003).

He was in his late 20’s back then, and he was a full-time gay guy - going on gay holidays, hitting the hottest gay discos, and wearing the right gay clothes, so you think he would’ve been HIV knowledgeable. We hung out with each other lots in London, meeting for meals, just hanging out, and I even went to one of his work functions. Then one day I casually told him that I was HIV positive; (I just came out and said it, nothing triggered it), he was surprised to know this, and after a few seconds we continued doing what we were doing that night).

After my announcement, our relationship changed. He no longer called me and when I called him he was distant. When I would run into him, (we lived a few blocks from each other), he would at least have a smile for me but he made no effort to 42 Spring 2012

suggest getting together and I was too hesitant to ask. A couple of years later I still wonder why he changed towards me. Was it because he was hurt that I had not told him about my HIV status earlier?

All of our friends in common knew about me, so I just assumed that he knew, but even if he didn’t know, you would think that he would have been more supportive towards me after learning this about me.

Last summer I was out of work for 5 months and another friend of mine was out of work as well. He was my age, mid - 40’s and I had thought he was extremely gay savvy. We were not good friends but had several friends in common and we would get together with these other friends from time to time. Well, one afternoon him and I met for lunch and I slipped into the conversation and told him that I was HIV positive. He didn’t flinch when I told him, and for some reason I had expected him not to flinch...he was good at showing no shock when told something. Well, ever since then we are in contact less then what we were before. Why? I reckon it is because I told him I had HIV. To this day I still don’t have any answer why these friends shunned me after I told them I have HIV. I have been seeing these two guys around town less and less so the hurt becomes less and less. But I still think about it from time to time as I find myself more and more cautious of who I tell. www.baseline-hiv.co.uk

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

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.

Confidential Support & Advice

For further information contact

me

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

Barnsley’s 1st local support group, supporting people living with HIV in our Borough @PositivelyUK positive about change

www.plusme.org Email: info@plusme.org Tel: 01226 320148

Waverley Care, 3 Mansfield Place, Edinburgh EH3 6NB Tel: 0131 558 1425 Email: info@waverleycare.org www.waverleycare.org Scottish Charity No. SC036500

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

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.positivelyuk.org

Answer: Simon Collins Question My CD4 count is about 700 and viral load is 1000 copies. Why do UK guidelines recommend starting treatment with a CD4 count of 350, whereas the US guidelines recommend starting at 500 and above? I worry about this difference and I feel I should be on treatment rather than wait till my immune system is irreversibly damaged.

Answer Thanks for your question. It is confusing when experts disagree after looking at the same evidence.

Both agree that the evidence is clear for starting treatment with a CD4 count of 350 or under. The potential advantages with a CD4 of 350-500 are less clear and there is even less data for people with CD4 cell counts about 500 with some studies finding no benefit. This lack of evidence for benefit is one reason why UK HIV experts have decided on 350.

Some doctors in the US group are more worried about the potential risk of not being on treatment. This is more related to your immune system working harder rather than a concern that your immune system will be damaged. At counts over 500 this puts you very close to someone who is HIV negative. These concerns may or may not prove to be important, but it is a big jump to use them to say everyone, at any CD4 count, should use treatment.

US guidelines have always recommended starting treatment at a higher CD4 – even when treatment wasn’t so good, even when people were using AZT monotherapy (as one drug) and in retrospect those guidelines were wrong. Experts don’t always get it right.

Your CD4 count is still very strong and your viral load is low. There is little evidence to say that early treatment will make a difference to your health.

If however, after looking at the research, you want to start treatment now, but your clinic has refused, you have several options: i) Tell your clinic that you are very concerned about transmitting HIV to a sexual partner, and that this is seriously affecting your quality of life. UK guidelines say that treatment can be used at any CD4 count for this reason. ii) Ask to see a different doctor or change clinics (this shouldn’t be necessary, but is always a last resort).

Iii) Consider joining a study that will help find the answer to when it is best to start treatment.

For more information on the study, please go to: http://ibase.info/home/start-study/ If your clinic does not give you these options, please contact i-Base in case we can help.

44 Spring 2012

i-base 0808 600 8013

ask a question by email, online or phone

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

0808 600 8013

take control of your treatment

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

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

SSUPPORTING olutionS EnablE HopE THE POSITIVE COMMUNITY FOR OVER 18 YEARS • 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

KPS TREBULLOM Respite & Retreat Bed & Breakfast Kernow Positive Support P. O. Box 85 Bodmin PL31 1ZN 01872 262221 office@kpsdirect.com www.kpsdirect.com Supporting people living with HIV in Cornwall with a range of specialized services, providing respite, retreat and bed and breakfast opportunities nationally.

Registered Charity No. 1104947

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

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

Robert Fieldhouse

Poz Profile Campaigner: John Percy When were you diagnosed?

The darkest, deepest 1980’s before the days that we knew what HIV was ‘with something doctors called HTLV III.’ What was that like?

‘I was in total shock, had Chlamydia, HTLV III and hepatitis B all in one go.’

When did you start HIV treatment?

‘I started therapy in 1996 on nevirapine, d4T and 3TC. Thanks to Dr. Churchill in Brighton I later got switched to tenofovir.’

‘Last year my CD4 dropped from 1038 to 220 during a treatment break lasting only six months.’

‘I managed to pick myself up with the help of KPS Trebullom in Cornwall, where I am now helping out as a volunteer.’

Volunteering history ‘I was a volunteer at Body Positive in Glasgow, Phace Scotland and then Waverley Care in Edinburgh.

I single handedly stood outside Scottish Parliament for six months every Wednesday to raise awareness of HIV stigma and discrimination.

People on the street wrote things about HIV on banners. I asked questions about HIV in the Scottish Parliament, to Tony Blair, Gordon Brown and David Cameron and got the same disappointing answers.’

Low times?

‘I moved to Brighton, my neighbour found out I was gay and HIV positive and set my front door alight. The government do not take HIV seriously enough. I get more discrimination from gay people than heterosexuals. We have no national strategy for HIV.’ Highs?

‘I set up an information point for heterosexuals and families in Brighton and had my own radio

show on the community radio station Radio Reverb, the first guest was my MP Des Turner. I went back on treatment in November – my CD4 count is back over 1,000, Hep B undetectable and HIV viral load undetectable.’

What are you currently working on?

‘I am helping publicise KPS Trebullom so that people know more about the respite and retreat centre there. Check out their website www.kernowps.co.uk/trebullom.htm Do you have a final message for BASELINE readers? ’Rest is not in my vocabulary. 30 years on I am still here.’ www.baseline-hiv.co.uk 47

news: treatment CD4 500:The Way to Go

People living with HIV on treatment who gain a CD4 count above 500 cells/mm3 with an undetectable HIV viral load have a mortality rate similar to that of HIV negative people.

Dr. Alison Rodgers from University College London and colleagues looked at death rates among people in 2 large multinational studies: the SMART treatment interruption trial and the ESPRIT study of interleukin 2 (IL-2).

The researchers concluded that, in the SMART and ESPRIT trials in people living with HIV who do not inject drugs, who were taking antiretroviral therapy with an undetectable viral load who maintained or had recovery of CD4 counts to greater than 500 cells/mm3 there was no evidence for a raised risk of death compared to the general population.

People who had CD4 counts between 350­ 500 cells/mm3 did appear to have evidence of higher mortality rates, but “the potential balance between the risks and benefits of starting ART at CD4 counts above 350 cells/[mm3] needs to be assessed in randomized trials, such as the ongoing START Trial,” the researchers concluded.

Cannabinoids may inhibit CD4 cell infection

by CX-CR4 tropic HIV

Compounds similar to the active components of cannabis (including tetrahydrocannabinol, or THC) have been demonstrated to inhibit entry and replication of HIV using the CXCR4 co receptor pathway in a laboratory study. This suggests that marijuana or similar synthetic drugs may have beneficial antiviral effects against CXCR4-tropic virus in people with late-stage HIV, according to new research.

48 Spring 2012

Zinc Finger Gene Therapy Takes Step Forward

At the recent 19th Conference on Retroviruses and Opportunistic Infections (CROI 2012), US researchers presented new data on a HIV zinc finger nuclease gene therapy SB-728-T. In the future, some believe zinc finger gene therapy may be one of a combination of strategies that will be used to bring about a cure for HIV. Study participants donated blood cells in a procedure called apheresis. CD4 cells are then extracted and processed with the zinc finger nuclease to disrupt the expression of the CCR5 co-receptor, which is necessary for many strains of HIV to enter into cells. The altered SB-728-T cells, effectively made resistant to HIV, multiply in the laboratory and are then re-infused back into the same participant.

Participants were given 1 infusion of 5 to 30 billion SB-728-T cells and have been followed up to 700 days so far.

All but 2 of the trial participants were men and the average age was approximately 47 years.

The single infusion of SB-728-T is safe and well tolerated. There were no serious adverse events except 1 case of arthritis that resolved after a few days. One year after the infusion, trial participants had maintained large increases in their total CD4 cell count.

CX-CR4 is a type of HIV that is found in people with late-stage disease.

This is the first study to show exactly how the marijuana receptors found on immune cells -called cannabinoid receptors CB1 and CB2 -- can influence the spread of HIV. Understanding the effect of these receptors on the virus could help scientists develop new drugs.

Robert Fieldhouse

Gilead Quad Pill Performs Well Against Atripla

The first ever study of two one pill, once daily HIV treatments – Gilead’s ‘Quad’ tablet (containing the experimental integrase inhibitor elvitegravir), its boosting agent cobicistat alongside tenofovir and emtricitabine versus Atripla (efavirenz, tenofovir and emtricitabine) shows comparable efficacy between the 2 treatments.

The trial which enrolled 700 people living with HIV and is expected to last 4 years included one third of people starting therapy with a viral load greater than 100,000 copies. In total 88 percent of those who took the Quad tablet in the study had an undetectable viral load (below 50 copies) at 48 weeks of treatment, compared with 84 percent of those taking Atripla.

Response rates were similar for those who began treatment with a viral load greater than 100,000 copies or with a low CD4 cell count; 84 percent of those taking the Quad and 82 percent of the participants taking Atripla were undetectable at 48 weeks.

CD4 rises were also greater among people taking the Quad- at 239 cells compared with 206 cells on Atripla.

2 percent of participants in each group developed drug resistance during the study.

In terms of side effects, which occurred in more than 10 percent of study participants, more people taking the Quad developed nausea (21 percent) compared with 14 percent of those taking Atripla.

On the other hand, dizziness (24 percent), abnormal dreams (27 percent) and insomnia (14 percent) occurred more frequently among people taking Atripla compared with the Quad- where respective rates were 7, 15 and 9 percent.

The new Quad pill is expected to be licensed before the end of August.

HIV Associated with Big Increase in Lung Cancer

Being HIV positive increases your risk of developing lung cancer by about 70 percent, but it is smoking that really adds to the risk.

US researchers compared lung cancer diagnosis rates and a multitude of risk factors among 37,294 people living with HIV and 75,750 HIV negative people.

People living with HIV who were current smokers were six times more likely to develop lung cancer, compared with people who never smoked.

The risk of lung cancer was also three times higher among HIV positive former smokers, compared with non-smokers. A COPD diagnosis also increased the risk of a lung cancer among people living with HIV by 90 percent. Compared with HIV negative current- and former smokers in the study, the risk of lung cancer among HIVpositive current smokers was 50 to 70 percent higher. Among those who never smoked, the risk of lung cancer was 60 percent higher among those living with HIV compared with those who were HIV negative.

Dolutegravir - Potent Option For Starting Therapy

ViiV Healthcare and Japan’s Shionogi recently announced that its experimental integrase inhibitor dolutegravir (formerly S/GSK1349572) works as well as raltegravir (Isentress), for people starting antiretroviral treatment for the first time.

In total 88 percent of participants who took 50 mg dolutegravir with 2 nucleoside/nucleotide reverse transcriptase inhibitors (NRTIs) achieved undetectable HIV viral load at 48 weeks, compared with 85 percent of those using a raltegravir triplecombo. Both drugs were well tolerated, with just 2 percent in each group stopping treatment due to side effects. www.baseline-hiv.co.uk 49

Did you know people living with HIV can now buy life assurance?

Financial Advisers Unusual Risks have been completing a number of HIV Life Assurance policies recently for many different types of clients.

Groups of people taking advantage of this new type of insurance product include young families, single people with children and gay men/women in partnerships.

‘Many financial advisers and banks remain unaware that HIV Life Assurance exists’ It feels good to be providing useful cover for people in genuine need of protecting their dependents. This is exactly what I had in mind when I started campaigning 12 years ago for people living with HIV to have Life Assurance made available to them at an affordable price.

Recent clients of ours Martin and his wife Leslie approached us looking for Life Assurance to protect their £157,000 mortgage. Martin is living with HIV and Leslie is HIV negative, so their existing financial advisers from the bank had found it difficult to get any Life Assurance for Martin.

Martin said, ‘I had automatically presumed that I would not be able to get Life Assurance because of my HIV status. Our existing financial adviser even told us that the product didn’t exist, so you can imagine my surprise when I found through your advert in BASELINE. that HIV Life Assurance was available’.

Leslie told me, ‘Although, I’ve been able to get Life Assurance to cover me and I’m HIV negative, our real concerns as a family are with Martin’s situation and we really need Life Assurance for our mortgage to protect our children in case something happens to him’.

50 Spring 2012

HIV positive people were excluded from taking Life Assurance for decades, so it is hardly surprising that many positive people automatically presume they cannot get Life Insurance. It is also understandable that many financial advisers and banks still remain unaware that such products exist.

The truth is that HIV Life Assurance has been available in the market since 2009, with the quality and price of cover improving all of the time since launch. Currently 50% of Life Assurance companies offer some form of HIV Life Assurance, however their terms and conditions vary enormously.

All of the companies will ask for details of your CD4 count, HIV viral load and past medical history as a standard procedure. Some of the companies will assess your application on this alone, whilst others will ask for unnecessary blood tests and nurse screenings.

You should seek specialist independent financial advice to find out which company is best suited to your needs and medical circumstances.

We have a policy of approaching every company on behalf of every client, because this makes certain that we find the best possible deal for your circumstances.

Many people who approach us are unaware of the exact amount of cover they require, or the budget they would like to commit. We are committed to showing them a range of quotes from £50,000 - £250,000 including all of the relevant costs for them to make an informed decision.

So, Martin and Leslie?

We offered Martin a quote for £50,000 of cover at a cost of £29.66 per month, £100,000 of cover at £56.76 per month and £157,000 of cover at £87.65

Chris Morgan per month. These example rates were for a non-smoker, aged 39 with a policy term of 10 years. We offered Leslie £157,000 of standard Life Assurance and Critical Illness Cover a premium of £21.30 per month.

Martin and Leslie decided to take £157,000 of cover at £87.65 per month because this is the full amount of their current mortgage. This they say, will ensure their whole mortgage is paid off as security for their children should something happen to Martin.

Unusual Risks are specialists in looking after HIV positive clients.

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 1

www.baseline-hiv.co.uk 51 14/07/2011 10:01

My HIV Nightmare Living a civil servant’s life in Africa was tough.

Just getting a meal on the table every day was a challenge. New clothing was for birthdays and Christmas, which would mean saving from September if I was to afford a dress/T-shirt per child.

‘The head teacher was waiting for me, shouting, accusing and blaming me for not telling the school about my boy’s diagnosis’ Life was getting worse by the day. My husband decided that we needed to leave the country if we were ever going to be able to afford school fees for our kids, food and to pay bills for the little house we lived in.

It took us almost a year of serious saving to be able to raise the airfare for my husband to come to England. It was an advantage that my husband and I were hardworking and would grow vegetables and maize for our consumption and for sale. My late sister who was living in Botswana at the time came to our rescue and topped up our savings to make our dream come true.

It was then that I realised I was pregnant with our boy. We were all very excited and found all the more reason to leave the country. My husband left when I was four months pregnant and I joined him as soon as our baby was born, leaving him in the loving hands of my mum when he was four months old.

Life was good in England. Never mind the cold weather, my husband and I were back in each other’s arms.

The most satisfying thing was to be able to buy tekkies (shoes) for my daughter, when it 52

Spring 2012

wasn’t Christmas or her birthday. To be able to buy toys, clothes and send money for my kids was the most amazing feeling I had ever had. As a strong Catholic, I knelt down each night thanking the good Lord for the opportunity to be in this country.

I spoke to my daughter and son almost every day and it was just a joy to hear their voices and know they were happy.

My daughter and son visited us when the boy was 18 months old. The moment I saw him at the airport my life was turned upside down.

He was no longer the boy I had left six months earlier. He was emaciated, withdrawn, afraid, lost.

I couldn’t help thinking that he would not be with us the next morning. I just couldn’t stop crying and before any tests/results I knew from just seeing him that he was HIV positive. I just wanted to hug him and never let him go.

I didn’t sleep that night. I spent the time just staring at him afraid to blink, doze and when I think of it now (nine years later) I’m sure I had gone mental, as had everyone around me. How could we stay with a critically ill baby and not call the ambulance to take him to hospital?

We took him to our GP the following morning and that is when I realised that my nightmare was just beginning. The GP didn’t want to touch him.

He called the hospital and said “I have got this emaciated, malnourished boy, don’t know what to do with him, so I am sending him to you,” in a very nasty, not my problem any more, sort of way.

It was then that I realised that I had to stop crying and fight for my boy. The attitude I got from my GP made me think and understand that once you’ve got HIV, it doesn’t matter how you got it, you’re tarnished with that stigma.

My boy stayed in hospital for about six months

Hope

and was discharged home as the boy I knew before. He had to be tube fed for some time and I had to collect the feed from the GP surgery. One time the GP refused to rewrite the prescription and asked me why I can’t buy food for my son. This time round I was stronger than before and just looked at him like he had suddenly lost his head.

My son started his primary education at a Catholic School. I hadn’t informed the school of my boy’s diagnosis. When I completed the forms for social services his HIV status was exposed and the school was not at all pleased. I found the head teacher waiting for me, shouting, accusing and blaming me for not telling the school about my boy’s diagnosis. She said I had put every child in the school at risk. I tried to explain that he posed no risk to anyone as all accidents should be dealt with using gloves and all fluids should be handled with care. She was having none of it.

It was so difficult trying to explain things to my son on our way home. I couldn’t handle all the questions of a 5-year old boy so I thought that only the truth would set us free. I told him that mum hadn’t done anything wrong but the head teacher had got upset because mum told somebody else that he was poorly but didn’t tell the head teacher.

I told him that sometimes adults get upset as well and that mum got emotional because the head teacher kept accusing her of something, which wasn’t her business.

My boy began bullying other students. He started to be isolated and wasn’t allowed to play in the playground with others during lunchtime for some time.

I was strong for my boy and kept telling him to try and control his temper and get along with everyone.

Now he is a different boy. He doesn’t say much, doesn’t do much, doesn’t learn anything. It seems like he has just given up. He doesn’t like school and its surroundings. Sometimes if you tell him to hurry up for school or to take his P.E. kit, he throws a tantrum and starts behaving badly.

There were times when I wished I wasn’t in the medical field. I could go to all the meetings, talks, conferences and talk freely to everyone but nobody will ever convince me that things have really changed because they haven’t. I see it all the time, in the wards, in the hospitals. HIV-AIDS; the stigma, it’s always there.

I don’t regret any decisions I have made for my boy, they were all to protect him. I am grateful to all the staff at Heartlands Hospital in Birmingham especially Dr. Welch and my boy’s nurse Yvonne. I wouldn’t have gone this far without Yvonne. I bet she has seen more tears from me than with any other kids she has looked after.

Does it get better now that my boy has been living with HIV for 11 years? He is physically fit and healthy at the moment just like any other kid of his age. But a parent’s heartache never gets better.

. . .

Why can’t he go on a week’s trip with his classmates?

Why can’t he stay at a relatives home for 3-4 days like his siblings do?

Why is he the only one who takes tablets in his class?

Now all I want for my son is for him to be able to understand his condition and move on with his life.

www.baseline-hiv.co.uk 53

Susan Cole

dear susan...

I’ve been HIV positive for 12 years and have mostly been in good health with a high CD4 count and undetectable viral load. Sometimes however I find it very hard to be optimistic about the future, I can’t help feeling that only bad things are coming my way health wise.

You’re not alone in feeling this way, many people living with HIV slip in and out of periods of optimism. Sometimes it seems like we’re bombarded with negative health stories linked to HIV. I’m feeling pretty crap about the feature in this month’s issue of BASELINE on ageing in women with HIV and I wrote it! So I’ll try to shake of the shackles of doom and gloom and let you know about some of the good news.

A study recently presented at the Conference on Retroviruses and Opportunistic Infections (CROI) 2012 indicated that people living with HIV who maintained a CD4 count above 500 and had an undetectable viral load can now expect a life expectancy the same as the general population.

That’s right, not that vague “near normal” life expectancy crap that makes me cringe every time I say it – the same life expectancy! I remember less than 20 years ago people living with HIV were told they could expect to live around 10 years. We’ve come a long way in a relatively short period of time.

But why be satisfied with that? Let’s talk about the other unmentionable C-word, “Cure.”

I remember going to quite a few international conferences on HIV, without mention of any studies looking into a cure for HIV. I felt gauche and naïve even thinking about it. But this year’s CROI was positively heaving with reports on research looking into a cure for HIV. Gene therapy? Unravelling viral persistence and HIV latency? Therapeutic vaccines and of course attempt to redux the Berlin patient?

54 Spring 2012

Okay, I don’t actually understand what these studies are about, but these are all areas science nerds are working in looking for a cure for HIV. Lots of work is still needed, but there is at least now a glimmer of light at the end of the tunnel. One of the biggest HIV nerds I know is convinced there’ll be a cure for HIV in our lifetime and he’s usually right about everything.

How about people who are co-infected with hep C? Basically fucked? Well actually no. There’s now an avalanche of drugs for hep C on the horizon. One of the next generation of hep C drugs for people who haven’t responded to other medication is now entering into two phase 3 trials so should be with us very soon.

Although there’s probably reason for optimism, I certainly don’t want to trivialise how you’re feeling. It can be tough living with HIV sometimes and many people with the virus experience periods of feeling low or depressed.

If you find your feelings of pessimism are difficult to shake off, or are overwhelming or disabling, it may be worthwhile discussing your feelings with your HIV doctor or GP. There are things you can do yourself to try to lift your mood. Getting regular exercise and sleep, socialising and eating healthily seems to work for many people. You can also take steps like trying to manage your stress, relaxation exercises and challenging any negative thought patterns. We all have different strategies for coping with feeling low. Shoe shopping may not work for everyone, but God knows, it has the potential to lift me out of the darkest pits of despair. Go with what works for you. www.baseline-hiv.co.uk

“Yes, we are still here!”

Established in 1992, so this is our 20th Anniversary Our special anniversary weekend is 28/29th September 2012 (open to new and existing members)

If you would like to find out more about NLTSG, come and experience a “taster” one day workshop in Birmingham on June 16th, contact Tom Matthews for details at tommatthews@gmx.com or 0121 689 9520

Living Proof Next 4 weekends....

6-8 JULY 2012 28-30 SEPTEMBER 2012 14-16 DECEMBER 2012 22-24 MARCH 2013

for people with a diagnosis of HIV for 5 years or more

Contact Post: BM LTSG, London WC1N 3XX Email: mail@nltsg.org.uk Tel: 07967 430797 Or visit our website www.nltsg.org.uk for further information www.baseline-hiv.co.uk 55 31 and maybe make a donation?

The Happy Life Programme in Taipei, Taiwan

As someone who lives in the Western world, to get an invite to speak as part of the Happy Life Programme in Taipei, Taiwan’s capital city, was an honour.

I felt very privileged as the only white person from the UK, to sit amongst 100 participants, 89 of them living with HIV. If you live with HIV in Taiwan you have to pay a percentage towards your HIV treatment and care costs. Taiwan has only a few clinics offering HIV care. All I could think of is how fortunate we are in the UK.

If you live with HIV in Taiwan you have to pay a percentage towards your HIV treatment and care costs.

In Taiwan at the end of 2010 there were just over 20,000 people living with HIV, 92% are male and 8% are female. I went to do some work with the Taiwan Lourdes Association, a non-profit organisation. Their main office is in Taipei (North of Taiwan) and a branch office is in Taichung (Central Taiwan).

The newspaper headline the morning after my arrival gave me some indication to the situation regarding HIV care in Taiwan. The headline read: ‘Department Of Health fines hospitals over HIV Fiasco’ (The China Post, 1st September 2011). The story was that National Taiwan University Hospital 56 Spring 2012

personnel had transplanted HIV organs to five patients. The two hospitals were going to be fined $150,000 Taiwanese new dollars for this error in judgment. The Department of Health went on to describe the three mistakes of the National Taiwan University Hospital: 1. Verbal miscommunication between the lab and coordination personnel.

2. The coordination personnel’s failure to verify the lab findings.

3. The medical teams’ failure to confirm the lab findings.

One speaker at the conference, Thomas Cai, Director of AIDS Care for China described Taiwan HIV health care as a Shangri-La in comparison to mainland China. Thomas described China as very black and white; Thomas went on to say that China only likes to speak about the good, the ‘white’ and the ‘black’ or rather, bad things people do not want to discuss. In this respect HIV would fall among the issues that Chinese people don’t want to talk about. China has an estimated 450,000 people living with HIV, with only three types of treatment available.

If you are HIV positive, you need to be able to

Joel Korn

afford your HIV care in mainland China. In the UK we complain that the NHS has to make cuts, but in China there is little money put into HIV care and if you live with HIV in China you don’t just have to pay to see your consultant but for your HIV medication as well.

Another participant, Joey, had lived with HIV for 21 years. Originally from Hong Kong he had lived in America for the last 25 years. Hearing his positivity was wonderful. He told the audience how looking after the mind was important when living with HIV. At the conference I was asked to offer feedback. I felt compelled to echo Joey’s kind words. I re-affirmed Joey’s words following my ‘Dealing with difficult emotions’ workshop. I fed back: “that positive in how we feel, see or taste life means a healthy, happy and long future living with HIV”.

The Lourdes Association said there are three main barriers to combatting HIV: Lack of young adult screening test: even though when men enter the army service (around 18 to 22 years old) there is mandatory

.

. .

testing. But before and after there is the major problem because most of them don’t get tested unless absolutely necessary.

Among Women: when in relationships women usually believe their partnerif they tell them they are monogamous so they usually practice unprotected sex and have few skills to negotiate safer sex. Women tend to only get tested during pregnancy.

Treatment adherence: A lot of people are afraid to take HIV medicines because of potential side effects. Plus, about 33% of people living with HIV in Taiwan are injecting drug users, which can complicate treatment taking.

Arriving home and reflecting on the experience it is hard to believe that Taiwan is so far behind with policies protecting people living with HIV/AIDS. Taiwan does recognise that it has an injection drug use problem and have set up needle and condom kiosks which provide clean needles, syringes and needle boxes. But there’s still too little mention of HIV in both the Taiwanese and Chinese media. www.baseline-hiv.co.uk 57

Pets: Reduce the stress of living with HIV An American study published earlier this year, found that being a pet owner was helpful to women living with HIV in managing their disease.

The study’s initial focus was on the impact of women’s social roles, (such as parent, grandparent, advocate and employee) on how they managed their HIV. The researchers were surprised to find that being a pet owner was helpful. Previously it was not thought to have much of an impact.

‘There are many physical and mental health benefits of having a pet.’

Ten per cent of the participants said that owning a pet was helpful and that their pets were a source of support and pleasure. Caring for a pet and the love that they gave in return reduced the stress of living with HIV. One study participant commented: “Dogs know when you’re in a bad mood... she just lays up under me, she knows that I’m sick and everywhere I go, she goes. She wants to protect me....”

This particular study also revealed that owning a pet reduces some of the stress of living with HIV. Although this particular study did not highlight any specific physical health benefits, these have been shown by a number of other studies, which highlight the following: Reduced blood pressure Reduced risk of heart attacks and strokes Less likely to become ill and have a better recovery Improved mental health status by meeting people Less likely to develop depression Dog owners take more exercise and meet more new people.

. . . . ..

58 Spring 2012

So these are some of the many physical and mental health benefits of having a pet, as documented in research studies. It can be seen that the positives far outweigh the negatives, but one of the most common problems is knowing what to do if you have a question about your pets health or behaviour. Most people don’t have the time, money or energy to keep going to the vets and also you can be unsure whether you have a problem that needs veterinary consultation.

In the next edition we’re going to focus on some detailed aspects of pet health that might be helpful, starting with basic care for the most popular type of pets; dogs, cats and rabbits. If you have any pet questions or problems, please send an email to robert@baseline-hiv.co.uk Here are some useful contacts to start with: Friends of the animals www.friendsoftheanimals.co.uk If you need help with paying for spaying/ neutering/vaccinations for pets and live in or can get to certain areas the charity is happy to give a discount.

Head Office 408 Bearwood Road. Bearwood, West Midlands B66 4EX. Tel. 0121 420 4201 or email midlands@friendsoftheanimals.co.uk Portsmouth shop:- 89 London Rd. North End Portsmouth PO2 0BN. 02392 660 660 or email south@friendsoftheanimals.co.uk Isle of Wight:- 17a Riverway Newport Isle of Wight PO30 5UX. 01983 522 511 or email south@friendsoftheanimals.co.uk Vets Now www.vets-now.com Emergency out-of-hours clinics, there are 52 in the UK.

Eleanor Parkes

Dog’s Trust www.dogstrust.org.uk If you become a member of dogs trust, £25 per year (£12.50 if you’re over 60), as well as helping a great charity you get unlimited access to ‘Vetfone’ a 24hr emergency advice helpline and Dog’s Trust’s own Canine Care Card.

020 7837 0006 (Mon – Fri from 8.30am – 5.30pm) Vetfone www.vetfone.co.uk A 24/7 emergency advice service. Call 01728 727673 (fixed fee £9.50) or 09065 00 55 00 (charged at £1.53 per minute plus network extras) Blue Cross www.bluecross.org.uk Pet Bereavement Service 0800 096 6606. The support line is open from 8.30am - 8.30pm everyday.

Email support line - pbssmail@bluecross.org.uk

Help us today and become a Beacon hero!

How You Can Help

Make a regular monthly donation of £5, £10, £20, £50 or £100 or make a one-off donation. The choice is yours.

Donate Online

Just visit www.sussexbeacon.org.uk and click on the Make a Donation button.

Please help us NOW to protect our future.

Thank you.

the sussex

beacon

20

years of HIV care

Robert Fieldhouse

news: hepatitis Great Results For Abbott’s Hep C Protease and Polymerase inhibitor Trial

HIV therapy Can Reduce Mother to Child Hep C Transmission

Women living with HIV and hepatitis who take HIV treatment and keep their CD4 cell count high may reduce the risk of transmitting hepatitis C (HCV) to their babies, according to new research.

Most studies of mother-to-child HCV transmission among HIV negative women have found rates below 5%. But the transmission rate for women who live with both HIV and HCV can be as high as 19%, particularly if women have uncontrolled HIV or advanced immune damage.

Short Therapy with GS-7977 Looks Good

Gilead’s still-in-development hepatitis C drug GS-7977 has demonstrated powerful effectiveness during a short course of treatment for people with hepatitis C alone.

25 people living with genotype 1 hepatitis C who had never taken hepatitis treatment before completed 12 weeks of treatment with GS-7977 and ribavirin. 22/25 remained undetectable four weeks after stopping treatment The drug is currently being studied in people with hepatitis C alone. People with HIV and hepatitis typically take treatment for longer 60 Spring 2012

A combination of the experimental oral hepatitis C treatments being developed by Abbott led to cure rates greater than 90 percent in people who had previously never taken hepatitis C treatment before.

“This demonstrates unprecedented cure rates for the most common form of hepatitis C infection.

And we were able to achieve those rates with only a 12-week duration of therapy,” said Scott Brun, Abbott’s divisional vice president for infectious disease development.

The mid-stage trial known as Co-Pilot, combined Abbot’s hepatitis C protease inhibitor ABT-450 boosted by the antiviral drug ritonavir with its polymerase inhibitor ABT-333 and ribavirin.

People received treatment for 12 weeks and were checked 24 weeks later for signs of the hepatitis virus in their blood. Absence of virus at this stage is called SVR, which means sustained virological response.

Abbott is also currently testing a drug from a promising class known as NS5A inhibitors in various all-oral combinations that it believes may improve cure rates for people who previously did not respond to treatment.

The most commonly reported side effects were fatigue, nausea and headache.

periods and it is not know how long a course of treatment someone living with HIV and hepatitis C would need take using this medicine.

The drug is also being studied alongside pegylated interferon over 24 weeks in people with genotype 4 and 6 hepatitis C.

Cost: £20.12pp Teams of 4 or more: £15pp BOOK NOW!

Challenge 2012

Raise funds for the HIV charity of your choice... or simply challenge yourself...

It might be just something personal you want to do for yourself, or it might be a group charity event. Perhaps you want to do something a bit different to mark a milestone, or share a new experience with friends.

You can climb the UK’s highest peaks, go abseiling or complete a long distance walk such as the Yorkshire Three Peaks.

If you have a large group or run a charity and you would like to run your own challenge then please contact the Large Outdoors office to discuss group discounts and to see what bespoke events we can run for you.

So why not get some mates together, or a group from work, and do something amazing in 2012. For full details and to book an event simply visit our site or call Gareth on 0161 401 0460.

Ben Nevis

Snowdon Scafell Pike

Yorkshire Three Peaks All of our events are fully guided meaning that you have a professional mountain leader with you every step of the way.

These challenges really are open to anyone and can be tailored to all levels of fitness and abilities.

There is no reason why YOU cannot work with us to complete a challenge, to date we have walked to the summits with deafblind adults and leg amputees to name just a few.

DO something TODAY sign up for a challenge in 2012.

Call Gareth on 0161 401 0460 or LargeOutdoors.com/challenge 2012

Robert Fieldhouse

BASELINE workshops in Romania Last month BASELINE headed to Bucharest to work with local HIV activists who provide treatment advice to young people, drug users, homeless people across the Romanian capital.

Alina Dumitriu is the Executive Director of Sens Positiv, http://senspozitiv.blogspot.co.uk/ a local HIV support and advice organisation. She has been providing one-to-one psychological support to people living with HIV both around living longterm with HIV and taking treatments.

The resource and training charity JUSTRI http://justri.org funded BASELINE to travel out to Romania to facilitate a series of workshops with local activists who provide treatment information to people living with HIV. HIV drug stockouts have become an increasingly frequent occurrence since April 2010. And another stockout is expected around September as the money to support treatment programmes runs dry. Alina told me that the total HIV drugs budget of 200 million Leu (£377,000) should really look like 300 million.

When the drug stockouts were at their worst people needed to visit the hospital every two days to collect medicines. The drug stockouts have demotivated many young people, some of whom acquired HIV more than 20 years ago in the Romanian orphanages, from sticking with their treatment. The legacy of young women stopping their treatment can be seen on the children wards of Bucharest’s Matei Bals hospital, where more than 20 abandoned HIV babies are now being cared for. Doctors, says Alina have become increasingly frustrated with the teenagers who are abandoning treatment.

JUSTRI has been working in Romania for many years and has recently supported the employment of two interns to work as treatment counselors with Sens Positiv.

62 Spring 2012

www.justri.org

One of the JUSTRI interns Daniel Jon told BASELINE, “JUSTRI has given my fellow intern Adriana and I a great opportunity to work alongside Alina to support her in her ongoing work to skill up people living with HIV in Bucharest.”

Alina said, “we have built strong relationships with the local hospitals and after a six year struggle we have agreed to work with the doctors in supporting people to stick with therapy in the hospitals themselves.”

The JUSTRI workshops focused on how the treatment advisors can work with young people to motivate them, with information and the skills to adhere to HIV treatment.

There are almost 9,000 people living with a diagnosed HIV infection in Romania and 7,352 people on HIV treatment.

JUSTRI is a small group of doctors, nurses, people living with HIV and others, from the UK, who work to help different groups of people with and working with those with HIV in various parts of the World, especially South-East Europe, the Middle East and India.

We’d like to thank JUSTRI for supporting our workshops in Romania. www.baseline-hiv.co.uk

THEN...

Don't die e of ignoranc

NOW...

Getting on with life LASS will be 25 years old in June 2012.

LASS’s work and approaches have changed significantly over 25 years: in response to the changes in the HIV pandemic; the development and improvements in HIV treatment and management; and the expanding global community in which we live and operate.

‘Beyond the Tombstone’: Living a Life with HIV Life with HIV has changed a lot over the 25 years: people with HIV can now live long and healthy lives. People live into their old age and medication is easier to take. You can get tested and know your result in 1 minute.

You can find out details about what we are doing in our 25th year on our website: www.lass.org.uk from April 2012.

David Rowlands

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

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

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

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

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

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

04

03 10

01 02

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

07 06

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

This reflects a small number of the valuable groups providing support to people living with HIV. If you can recommend a local HIV or hepatitis support group email: david@baseline-hiv.co.uk 64

Spring 2012

www.baseline-hiv.co.uk

Join More than 20,000 Community Leaders, Scientists, Youth, Researchers, and Advocates and Play Your Part to Change the Course of the HIV Epidemic

GET INVOLVED IN AIDS 2012!

FOR MORE INFORMATION AND TO REGSITER VISIT

www.aids2012.org

HIV global figures

‘Before there was a name for it, there was a voice. Before there was treatment, there was a movement. AIDS activism has revolutionized the way the world approaches health.’

2.7 Million:

The number of people newly acquiring HIV in 2010.

UNAIDS

‘You do not get more with honey than you do with vinegar; you just do not.’

1.8 Million:

The number of people who died of AIDS in 2010.

Larry Kramer, Founder of ACT UP

‘There is a false belief that the AIDS epidemic is under control. While circumstances for people living with HIV are much improvednearly 2 million people will still die of AIDS this year and AIDS activism is needed now more than ever!’

0:

UNAIDS vision for new HIV infections, discrimination and AIDS-related deaths.

UNAIDS Civil Society Partnership Advisor Eric Sawyer

66 Spring 2012

www.baseline-hiv.co.uk

IS IT

TWO RED AND

ONE GREEN, OR THE OTHER

WAY ROUND?

If you don’t take it, talk about it.

Anti-HIV medication can be complicated, but that shouldn’t stop you taking it properly. Your doctor or nurse can help you deal with problems or make changes to your prescription.

Find out more at www.yourstoryyourscript.co.uk YOUR YOUR STORY, STORY,YOUR YOUR SCRIPT SCRIPT April 2012, VIUK12NP068

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