SHOP: (PRODUCT)RED™ HELP: Haiti HUNK: Poz Body Builder March 2010. ISSUE 2
Pick me up. I am free.
Can’t let
my meds mess
Blue, yellow or (RED) With a general election just a few short months away, it’s easy for us to become a little too introspective.
up my night,. they Can
But when the ‘Me, Me, Me’ of personality politics has hushed; the same global issues (and many more home-grown ones) will still be there wanting solutions.
wait…
The driving forces behind (PRODUCT)RED™ have gone into overdrive of late. Election campaigners can learn a lot from their PR a mix of simple messaging, seductively presented products. Overall stunning simplicity which never trivialises the seriousness of the issue of AIDS in Africa. IMO it works; but check it out for yourself at www.joinred.com and join the campaign. Thanks to all the clinics who have agreed to distribute free copies of BASELINE; if you’d like more next time send us an email to editor4baseline@hotmail.co.uk If you are a reader, you can get your own e-copy of the magazine by sending an email to the same address. Please join our facebook group (BASELINE) and follow us on twitter (Baselinetweet). TM
Editor:
Robert Fieldhouse
Associate Editor: Jane Phillips
Sub Editor: Joanne Russell
Editorial Support: Tom Mathews
Design & layout:
If you don’t take it, talk about it.
Meryl Media - 0161 235 7279
Publisher:
Image supplied by Bugaboo
Fieldhouse Consulting Limited
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
Email: Phone:
editor4baseline@hotmail.co.uk
0121 449 4405, 07886 159735
Copyright of all images and articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in Baseline is not to be taken as any indication of health, HIV status or lifestyle. August 2009, HIV/0509/2906
In this issue
4 byline 5 drop-us-a-line 6 (PRODUCT)RED™ 8 headline: uk 16 headline: global 18 Hep ‘B’e aware 22 confidentiality: NAT special 24 headline: TB 26 masculine: built to last 31 headline: healthy living 33 lifeline: positive bloggers 34 hotline 38 headline: treatment 40 myline: Jim Davis 42 7 hopes for a new Government 44 Q & A: i-base 46 stigma 50 lifeline: HIV support groups 52 HIV and mental health 55 punchline: kope 56 HIV life assurance 59 caring with confidence 60 myline: Jeffrey Huw 63 myline: Julie Musonda 65 headline: hepatitis 66 fineline: europe 03
deadlines
for the next issue Copy 10/04/2010 Advertising 15/04/2010
It’s brilliant. Dr Laura Waters, Chelsea and Westminster Hospital, London
Robert Fieldhouse was most proud in 1997, helping people with HIV learn about the new treatments that would save their lives. Jane Phillips is a 41 yr old, married, constantly surprised, new-ish mother. Has re-launched herself more times than Cher; the last time seems to be working out OK.
Julie Musonda works for Leicestershire Aids Support Service and a volunteer member of the LhivE user-led peer support group. Jay Obrecht’s first cartoon strip appeared in The Sun. He lives, eats and breathes cartoons, believing they are a powerful tool to teach, persuade, impress and entertain.
Chris O’ Connor covers issues from the wine Mike Kear’s wonderful photography can be trade to the trade in counterfeit medicines and has reportedly widely on HIV.
viewed at www.mikekear.com
Nicola Jacobs is Policy Officer at NAT. Her Gareth Williams can be found on Baseline areas of work include housing, confidentially Challenge weekends when set free from the desk of his publishing empire, Meryl Media.
Jim Davis is a writer and broadcaster & has presented ‘Sex in the City’, a sex a relationships phone in on London’s LBC 97.3 since 2007. He lives between London and Cambridge.
and psychological support of people living with HIV. Prior to working for NAT, Nicola spent time as a caseworker for an MP.
Elias Phiri is Head of Awareness Programme at TB Alert. He has worked at THT as African Sector Development Officer and at ACIA in Mitcham.
Kevin Waite established the welfare service at London Lighthouse. His company, It’s So Easy Travel Insurance, specialises in providing travel insurance and life assurance for people with medical conditions, including HIV.
Debbie Laycock is the Co-ordinator of the UK All-Party Parliamentary Group on Global Tuberculosis.
Simon Collins is one of the world’s leading Jeffrey Huw is a science writer from South Wales HIV advocates. He heads up HIV i-base. who now lives between South London and the South of France. 04
Thank you Robert and Jane Wishing you all the best with BASELINE... Respect Spike Rhodes xxx The magazine looks brilliant, really engaging and informative - the right mix of useful info and tasty titbits! Hope the launch went well. Jenny Bickett - London Dear BL: first impressions are really positive. It looks like someone really cares what goes on the page, and how it looks - a rarity - there didn’t seem any dead ‘filler’ space it all looked like good ‘addition to knowledge’ reporting. I like this. Chris - London The magazine is great. I like the way you cover a multitude of topics and everything is in a really free and easy style. It’s a bit like having the taster menu in a restaurant: you get to sample a bit of everything without having to wade through a whole plateful. Andrew Balkin Former editor, Plusve Just received the copies of Baseline and I am very impressed. We had despaired when Positive Nation disappeared but this is a very worthy replacement. I like the fact that it is aimed at everybody affected by and/or interested in HIV, and the wide range of topics covered. I also like the size as it will be easier for patients to take away discreetly. Best wishes and many thanks Francesca Taylor, Health Advisor - Lead HIV, West Middlesex Hospital
Congratulations on producing a fresh, readable and worthy successor to PN. Edwin J Bernard Former editor HIV Treatment Update Love it Rob. Well done to the crew. Anna Poppa Former editor, AIDS Treatment Update Dear BL: Hi. I’m a long term poz male (diagnosed in 1988) and saw your magazine the other day and wondered if there was an online version? BL: We are working on it right now - very best wishes. At my appointment for my latest “New Fill” this morning I came across BASELINE. Many congratulations ! I will take a copy to our Men’s Group tonight and put details on our web site. Can I also request an e copy of the magazine. I have been away for about six weeks, but understand that our group continues to flourish. Hope that you are well, best wishes. Martin Wilcock London Positive Gay Men’s Group Hi Robert. I hope you are well and rising, to the challenges, in your own inimitable way, of the launch of the magazine? Thank you for our copies we would very much like to continue to receive. People have already been asking when there is a new edition, which is great. We run the three clinics in York, Harrogate and Scarborough I will make sure we distribute them to all services. Thanks again for your hard work and a great magazine which, like you, I hope to better empower and inform people. Best wishes Peter Tovey Clinical Nurse Specialist, Department of Sexual Health. Harrogate District Hospital 05
one colour unites us
Bugaboo joined (RED) back in October last year. Currently, they are the only (RED) partner to donate 1% of all sales across their entire range. If you were to purchase a (RED) baby buggy (which retails around £400) the money given by Bugaboo from your purchase could provide lifesaving medicine for 3 weeks to someone living with HIV in Africa.
Jane Phillips
Product (RED) ™
So if you are thinking of buying yourself something from one of the RED partners – check out the website to see if you can buy it in (RED) and give the gift of life to someone too.
(RED). It’s just a colour right? It’s the colour of emergency. 3,800 men, women and children die with AIDS every day in sub-Saharan Africa, that’s an emergency. (PRODUCT)RED™ is a concept that some of the world’s most iconic brands have signed up to. Companies whose products take on the (PRODUCT)RED™ mark contribute a significant percentage (some up to 50%) of the sales or a portion of the profits from that product to the Global Fund to Fight AIDS, TB and Malaria, which was created in 2002 .
“We must all come together in supporting the Global Fund and the fight against AIDS. ...I applaud (RED) and its partners for their vision and commitment” Nelson Mandela. The idea is that, as a consumer, you have the choice to buy something knowing that you are directly helping those people who need it most in Africa. (RED) isn’t a charity, it’s a business model - it’s also a solution to help people receive HIV treatments. For just 20 pence a day, 2 pills can be provided to keep someone with HIV alive and healthy.
(RED’s) current partners are: American Express (in U.K. only), Apple, Bugaboo (our front cover image), Converse, Gap, Emporio Armani, Hallmark, Dell, Nike and Starbucks. For more info please see:
‘So far, (RED) purchases have helped more than 84,000 pregnant women receive treatment to help prevent transmission of HIV to their babies.’
www.joinred.com helped buy antiretroviral treatment for nearly 2.3 million people in Swaziland, Rwanda, Ghana and Lesotho.
www.theglobalfund.org
One company achieving a lot of exposure now for their product is new partner Nike. Footballer Didier Drogba advertises their (RED) coloured laces and Grand slam tennis champ Serena Williams has just won the Australian Open wearing (NIKE)RED laces! Manchester United and Arsenal players turned the Emirates stadium (RED) recently wearing (RED) laces and track suit tops.
Bono (U2) and Bobby Shriver created (RED) back in 2006 to engage the private sector in the fight against AIDS in Africa. Private business only contributes less than 1% of the Global Fund’s total resources. Since its launch in the spring of that year, more than $140 million has been generated by (RED) for the Global Fund. (RED) money has 06
07
Big Chill: Icy times at ICW
UK News: Plus Me win national award
Barnsley’s HIV support group Plus Me has triumphed in Gilead’s annual Putting Patients First award. Plus Me was set up by Karl Cooper following his departure from SHIELD in Sheffield. Gilead’s Stephen Head said; ‘the award is well deserved, Karl is highly motivated.’
Jackie (no) Moore
Birmingham’s HIV support group ABPlus said goodbye to manager Jackie Moore last month. The group which provides services to over 400 clients currently relies on volunteer support alone.
McQueen’s status outed in death Just 24 hours after the suicide of Alexander McQueen, pinkpaper.com published an interview with Paul Stag, a former boyfriend of the fashion designer in which he alleged McQueen had been HIV positive; “He was so proud that he was out to the fashion world as HIV positive and representing it in a good light. He also helped so much with fundraising for the Elton John AIDS Trust, THT and Spanner Trust.” Stag told the online gay website.
CBE Sims
Ruth Sims has become a CBE in the New Year’s honours list for her voluntary work treating HIV patients in Uganda. Ruth is a vice-president of the Mildmay, a UK charity and founder of their Ugandan centre and hospital. 08
The International Community of Women Living with HIV (ICW) is shutting down its International Support Office in London. Redundancy notices were delivered to workers in December. ICW was founded in 1992 to give positive women a voice in areas of HIV treatment, reproduction rights and research into female HIV infectivity. A splinter group, led by ICW Latina but including women from African, North America and Asia pacific regions, are to carry on and the steering committee now operate from Buenos Aires. The breakaway group gave the ICW UK board of trustees a vote of no confidence last year after ‘debates and conflicts on future direction’. According to one ICW worker, “…things got really vicious. It was a mess. Last summer, the chair and seven board members had resigned over differences.” In a letter, ICW members were told: “…Trustees of ICW UK have taken the decision to wind up the International Support Office. There has been debates and conflicts within the network over resource allocation and future strategy...after a meeting in Buenos Aires, it was apparent it would be difficult to maintain effective management and accountability of the organisation though the UK office.” According to a statement from ICW in Argentina; “This is an exciting time for ICW as this meeting initiates the rebirth of our network. ICW exists to ensure that HIV positive women are able to influence policy and programmes that impact their lives.” It is understood that a European HIV positive women’s campaigning network is currently being set up in Germany. For further info: http://www.icw.org/
Seven priorities for a new Government to tackle HIV in the UK NAT is concerned that HIV in the UK has gone down the political agenda, despite prevalence significantly increasing. The General Election in the next few months provides an important opportunity for politicians to commit themselves to taking action on HIV in the UK. There are now more people than ever before – an estimated 85,000 – living with HIV in the UK. More than a quarter are unaware of their infection because they have not been tested, having serious consequences for both individual and public health. NAT is calling on parliamentarians, policymakers and the new Government in 2010 to take forward seven specific actions that would support better HIV testing, prevention, treatment and care, and policy in the UK. These are:
Better testing
A national screening programme for HIV Nationwide reductions in the proportion of people with HIV who are diagnosed late
Better prevention
Increased expenditure on cost-effective HIV prevention at national and local levels, within ring-fenced public health budgets
Better treatment and care
HIV included in Department of Health long-term condition strategy, policies and programmes The AIDS Support Grant retained, and maintained in line with the social care needs of people living with HIV
Better policy
A cross-departmental strategy for HIV post-2010 which includes a clear action plan to tackle HIV-related stigma and discrimination The appointment of a high-level ‘HIV champion’ to advocate for the HIV strategy across Whitehall, the NHS and local government 09
HIV Milestone Closure Threat
UK News: Just what the doctor ordered
Milestone House in Edinburgh, among the first in the UK to offer specialised care to people with HIV and AIDS is facing closure due to funding cuts. The centre was opened in 1991 by Diana, Princess of Wales. The centre, currently housing 14 residents and helping a further 200 people, with a staff of specialised nurses and social workers, could be forced to close after the City of Edinburgh Council threatened to withdraw funding. Waverley Care, which runs the facility, has written to users warning them of the funding threat. The council has told Waverley, that it may have to find “alternative funding” and suggested patients could be treated at home. The centre was originally run as a hospice.
Doc Barber in Nepal
HIV doc Tristan Barber from Mortimer Market Centre in London has spent the last six weeks volunteering in Nepal for Global Medic Force. Barber worked at 3 HIV clinics mentoring staff to provide better HIV care for the local population where the prevalence of HIV is around 10%. The trip was made possible through the generosity of staff, performers and regulars at the Royal Vauxhall Tavern. One week into the trip Barber told BASELINE; “I wasn’t shocked by mice at lunchtime, but by a girl who walked 5 days to get public transport to the hospital to be diagnosed with HIV and TB co-infection.”
Scottish Conviction
A man has recently been convicted in Scotland of the reckless transmission of HIV. He had transmitted the virus to his partner of six years. The man was also charged with culpable and reckless conduct with three other women, who did not become HIV positive. 10
Milestone House was the first purpose built hospice for people with HIV/AIDS in the UK and has evolved into an intensive residential support unit and a community support service for people with HIV, receiving referrals from across the UK. David Johnson, Waverley Care’s director, said that he was in discussions with the city council and that no final decision has been made. One unnamed service user told the Scottish press; “Without Milestone,I’m convinced many drug users would simply slip back into their bad old habits… we could be looking at a new AIDS epidemic in the city if Milestone wasn’t there offering support.” End of the road for Milestone?
Brum deal for positive housing
UK News: Wish you were here?
Edinburgh HIV clinic plans
A pioneering £9 million ‘one stop shop’ centre for HIV and sexual health services is set to open 2011 in Edinburgh. Family planning and GUM will be joined with HIV testing and treatment, a UK first, claims NHS Lothian. The Chalmers Centre will see the demolition of the rear of the GUM clinic at Chalmers Hospital in Lauriston - interior refurbishment, and a three story extension. 50,000 patients are expected to access the new centre. HIV patients were consulted for layout and access to the new clinic and the initial plans were changed to include a ‘discreet’ entrance to the clinic. HIV services however will continue to be split between the new centre and the Western General which will handle in-patient care. Existing HIV services at the Edinburgh Royal Infirmary will move to the new centre. Edinburgh remains the HIV capital of Scotland. There are currently 2,238 people living with HIV in the Lothian region, accounting for more than a third of all Scotland’s cases. In December 2009 the Scottish Government announced its HIV Action Plan. Public health minister Shona Robison said the scheme would see more work targeting at-risk groups. The Plan will also work towards a national drug purchasing plan to try and reduce the cost of antiretrovirals. 12
A new housing development for HIV positive people has been given the go-ahead by Birmingham City Council. The Department of Health has committed a capital grant to fund the project in partnership with Adullam Homes Housing Association. The new complex in the Small Heath district of Birmingham will consist of 17 two bedroom flats, six short term units and a larger family unit. The development is to open in January 2011. Paul Toal, HIV Manager at Adult Services, Birmingham City Council told BASELINE; “There is an increasing need for services for people living long term with HIV. We are seeing more episodes of hospitals stays, and people need support and a stable environment when they come out of hospital.” But HIV activists in Birmingham have questioned the need for more two bedroom flats when, they say, many HIV positive people have families. Toal commented, “We are looking at the housing needs for people with larger families, and we are talking to housing associations to ensure accommodation for this group. Toal added “… this initiative is ‘totally independent’ of the AIDS Support Grant for Birmingham. We are looking to carry out another review of HIV services, we want to look at basics: how do people access transport, getting to clinics and work, how can we support them returning to work. We are talking to the National AIDS Trust on this.” Birmingham City Council completed needs assessment within the last 12 but according to Tom Matthews, Vice local HIV charity ABplus appear to have commission according to its findings.
an HIV months, Chair of failed to
Adullam Homes is a specialist housing association providing 756 units across the Midlands and North West of England.
SUNDAY 6TH JUNE 2010 Join us at Europe’s largest sponsored walk to support people affected by HIV and AIDS.
Sunday 6th June 2010
at Potters Fields Park Register at
walkforlife.co.uk or call 020 7539 3895
Crusaid’s Walk for Life 2010: 21 years of help and hope.
Contaminated Blood Bill Bluster
UK News:
Manchester is (not so) HIV positive
The ‘Manchester is HIV Positive’ World AIDS Day banner developed by the city’s World AIDS Day Partnership was slashed from the railings Sackville Gardens (in the heart of the city’s gay village) at the beginning of November and thrown into the canal. The incident was reported to Greater Manchester Police by the LGF (Lesbian and Gay Foundation) as a hate crime. LGF Spokesman Andrew Gilliver told BASELINE, “The police visited local gay venues. It was felt that some of the customers may have translated the message in ways which it was not intended and that it was quite likely that customers of any of the venues could have removed the banner.” A month later Greater Manchester Police received a number of complaints after stickers which read ‘The National Front. Homosexuality Equals AIDS. The Queer Plague’ appeared around Canal Street. A few defiant locals began soon tearing down the stickers. Meanwhile the local HIV community is still awaiting presentation for Manchester City Council to publicly present the findings of its HIV needs assessment which took place last summer. 14
The Contaminated Blood Bill was due to face a House of Commons vote on 5th February. However, after the government whip objected to the bill on the day, the vote was delayed. The Private Member’s bill is now scheduled for the 26th February although whether it will be heard then is questionable given the limited time before the general election. ‘It is shaming for the Government to have denied a debate on the bill in such a “hole in the corner” way. Those responsible for the delay have committed a foul disservice to all those affected and bereaved”, said Chris James, Chief Executive of the Haemophilia Society. 4,670 haemophilia patients were infected with hepatitis C through their NHS treatment, and of these 1,243 were also exposed to HIV. An estimated 1,974 have since died. On February 3rd hundreds, some of whom are terminally ill, travelled to London to lobby their MPs. The bill saw swift passage through the House of Lords thanks to the work of Lord Morris of Manchester, who drafted the bill. With a general election looming the Haemophilia Society is threatening to ‘name and shame’ those responsible if the bill does not pass and ensure, as author Ruth Rendell stated in a letter to The Guardian on January 30, that they are: “…made accountable to an electorate overwhelmingly in support of this humane Bill’s urgent enactment.” A woman infected with hepatitis C will finally be allowed to take her case to the high court after becoming infected by contaminated blood products 20 years ago. Sharon Moore has received permission for a judicial review after her claim was excluded from the Skipton Fund set up by the government to offer financial support for people infected with Hep C from blood products. Her solicitors say the case resolves around the assumption that the virus cleared her system after six months, when she wasn’t told she had been infected until 11 years after the event.
US HIV travel ban is over
On January 4th, the United States of America ended its 22-year-old ban on HIV-positive foreigners entering the country.
Global news
US may increase Global Health Funding by 9 Percent
German Pop Star charged in transmission case
Nadja Benaissa, 27, one of the members of Germany’s biggest girl group, No Angels, has been charged with one count of aggravated assault and two counts of attempted aggravated assault for allegedly having unprotected sex with three men without disclosing that she was HIV-positive. One of the men has tested HIV-positive. Ms Benaissa is thought to be the first woman to be accused of criminal HIV exposure/transmission in Germany (there have been around 15 cases so far, all thought to have involved men). Since Bernaissa was a minor when the alleged acts took place (in 2000) she may be tried as a juvenile. But she could still face up to ten years in prison if found guilty of all charges. Benaissa was arrested in April 2009 following at a gig in a night club in Frankfurt. Charities like the German Aids Network said the arrest was ‘over the top’ and some German celebrities have also spoken out against what they perceive as the unfair treatment of someone living with HIV/AIDS.
Euro Activist has heart attack
Leading European HIV Activist Henrik Arildsen was recovering at home in January after suffering a heart attack. 43 year old Arildsen is chair of HIV Denmark and HIV Europe, an umbrella group bringing together positive-led groups from all over Europe. “Everything is good, no pain, no harm,” he told BASELINE, “I will be relaxing for a few days before I will be at full steam again.”
Microbicide disappointment
Pro 2000 gel studied in over 9,000 women has shown no effective protection compared to a placebo. The result was “disappointing” say researchers after the gel had shown good results in a smaller trial…
Microbicide hope Manto is dead
Former South African Health Minister Manto Tshabalala-Msimang, once dubbed ‘Dr. Beetroot’ for advocating lemon juice and beetroot instead of antiretrovirals has died of liver failure aged 69. Leading South African activist Zackie Achmat said, “I hope that people speak the truth without venom.”
16
….However the Caprisa 004 trial in South Africa, of a tenofovir-based gel, is expected this summer, while the trial of the same gel versus pre-prophylactic oral tenofovir is underway in a number of African sites. The University of Pittsburgh has just been given $7.2 million to test two microbicide gels to curb male to female transmission of HIV. The RC101 microbicide will block HIV from entering CD4 cells and the CSIC microbicide will deactivate an enzyme the virus needs to replicate.
Under the Obama administration’s proposed 2011 budget, global health programmes, including those for HIV, would receive a 9 percent increase, from about $8.8 billion in 2010 to $9.6 billion. About $7 billion would be allocated to the President’s Emergency Fund for AIDS Relief (PEPFAR). Some AIDS and health advocates say the sums are insufficient for the administration’s stated goals, which include placing 1.6 million more people on antiretroviral drugs, with a target of more than 4 million by 2014. By that year, the administration aims to prevent more than 12 million global HIV infections.
Greg Louganis turns 50
On January 29 Greg Louganis, the only man to sweep the board in consecutive Olympic diving medals, celebrated his 50th birthday. Louganis was diagnosed with HIV in the run up to the Seoul Games in 1988 where he completed his Olympic haul which had begun at the Los Angeles Olympics in 1984. Louganis has been an outspoken advocate for HIV awareness.
World Cup HIV prevention
Plans to brand condoms with footballs during the World Cup in South Africa and to decriminalise prostitution have been branded ‘nuts’ by the mayor of Cape Town. 450,000 visitors are expected in South Africa, home to an estimated 5.2 million HIV positive people.
Anti-AIDS Bar opens in China
A gay bar in Dali, China opened just before Christmas, part funded by the Dali Health Bureau. Customers at the not-for-profit bar will get free condoms. On opening night volunteers staged a play about HIV prevention. The Chinese government has recently called for local authorities to step up prevention work. The Chinese president, Hu Jintao recently broadcast that discrimination against people with HIV had to end. However, a director of the Chinese AIDS Action Project told reporters that non-governmental agencies were restricted by government, unable to raise funds, and were subject to police surveillance. 17
hepatitis ‘B’e Aware
Transmission Routes, Symptoms, Treatments and Prevention
Hepatitis B (HBV)
Jane Phillips
is a bloodborne virus
Topline: The HBV virus is transmitted through contact with blood and body fluids 1 in 3 of the world’s population is infected with HBV A preventative vaccine is available HBV is much more infectious than HIV
Infected blood or bodily fluids. Normally transmitted through sex (e.g. rough sex where blood is drawn/rimming), and/or sharing contaminated needles/lubricant. Can be passed from a mother to her newborn baby. Symptoms normally occur 80-130 days following exposure: these can include loss of appetite, nausea, vomiting, diarrhoea, pain around liver area, tiredness, itching, and jaundice. Treatments include tablets and/or weekly injections. There is a safe HBV vaccine, no cure (although some people clear it themselves).
Your Liver:
Is the largest organ in your body Stores fats, sugars, vitamins and other nutrients that we needs to keep healthy
“Science is organised knowledge. Wisdom is organised life”
Helps your body get rid of toxins and infections
HIV & HBV Coinfection
HBV does not speed up HIV infection. HIV positive people may not respond as well to the HBV vaccine. The 2010 BHIVA* Hepatitis guidelines state all newly diagnosed people with HIV should be screened for coinfection with HBV & HCV (hepatitis C).
Is the only organ that can regenerate itself
Surface protein HB surface antigen *British HIV Association
The Hepatitis B (HBV) Virus
Treatments for HBV:
Is one of a number of hepatitis viruses that infects liver cells. It is a DNA virus made up of an outer shell containing proteins. There are eight different strains (genotypes) of hepatitis B.
To treat chronic HBV, there are two kinds of treatments: anti-virals and interferons. Antivirals (tablets) work by stopping the virus from replicating (reproducing more of itself ). Interferons (taken as an injection) help your body’s immune system fight the infection.
HBV is an extremely resilient virus; it can survive for up to 6 months at room temperature. 90% of people will experience an acute infection and clear the virus naturally (within 6 months). An infection lasting more than 6 months is referred to as chronic. 5-10% of adults will have a chronic infection and many carriers are often unaware of their status. If left untreated, over time, HBV can lead to liver cancer and even death in around one quarter of people with chronic infection. HBV DNA 18
core protein HBc
The ideal goal of chronic HBV therapy is the complete eradication of the virus. However, despite recent advances in treatment strategies with newer and more potent antiviral agents, complete eradication of HBV is still not possible. Therefore, the long-term goals of treatment should be the prevention of liver cirrhosis, liver failure, and liver cancer. Treatment outcomes largely depend on when you were infected, (with childhood acquired
infection being the hardest to treat) and how much damage has already occurred to your liver. More information on treatment options next issue. A blood test will show if you have fragments of the hepatitis virus remaining in your blood. If hepatitis B surface antigen is detectable you may be capable of infecting other people. A small minority of people with detectable virus are what doctors call ‘hepatitis B e-antigen positive’ and may be highly infectious to others. It is possible to have the level of your hepatitis B DNA measured by viral load testing. 19
hepatitis ‘B’e Aware continued: Four stages of HBV progression Immune intolerance – HBV reproducing freely with few or no symptoms, this lasts for several weeks. Immune response – your body’s natural defence attacks the HBV cells and starts to clear your infection. Some people (such as people living with HIV) are less likely to naturally clear the virus and will start to show symptoms & feel unwell. Viral clearance – or ‘seroconversion’ because your body will make antibodies in response to HBV (this is called the ‘e’ antigen). During this stage the virus stops reproducing. Immunity to HBV – this is when you produce a full antibody response and you clear the virus. HBV usually disappears from your body completely. Remember: If stages 3 & 4 don’t happen you would be left with persistent HBV infection and may develop liver damage.
Lifeline: Using condoms consistently when having sex and not sharing lube can reduce the likelihood of you contracting or passing on hepatitis B If you inject drugs, never share your needles, water or other injecting equipment Get immunised against HBV
Baseline: Assess your risk of having or contracting HBV HBV is 100 times more virulent than HIV. If you feel you may have been exposed to HBV speak to your doctor about taking a test Always ask for help and support both from family/trusted friends or at the clinic For more info check out: www.aidsmap.com, www.britishlivertrust.org.uk, www.hepb.org, www.hivandhepatitis.com 20
confidentiality and HIV NAT for BASELINE Nicola Jacobs
One key principle of NAT’s (National AIDS Trust) work is to listen to the concerns of people living with HIV and to position those concerns at the heart of our work. One such concern that is often raised is about how your HIV positive status is kept confidential, particularly in healthcare settings. All people want to receive the best possible healthcare, and most people accept that to achieve this, some amount of personal medical information will have to be shared; for example, between your GP and your HIV Consultant. However, the need to feel assured that your personal information is being handled appropriately is understandable.
‘People living with HIV have to be confident that the NHS will protect their personal information.’
Concerns
Living with HIV may lead you to have a number of worries, for example, fear of others in your community discovering you are HIV positive, concern that your information will be shared with the Home Office or other public authorities, or worry about HIV-related discrimination. Since half of all reported cases of HIV discrimination are in healthcare settings, it is understandable that people living with HIV might want access to their information to be restricted to those directly involved in their care, and on a ‘need to know’ basis. 22
People living with HIV have to be confident that the NHS will protect their personal information. If they are not, the potential repercussions for individual and public health are serious, and could include people not HIV testing, or not seeking appropriate treatment and care once diagnosed.
NAT’s review
NAT set out to discover what protections are in place to ensure the confidentiality of medical information and what rights people living with HIV have. We began by reviewing the different protections which are in place in the NHS. Healthcare professionals in all parts of the NHS have to respect patient confidentiality on the basis of many legal, ethical and professional obligations. The common law of confidence has long established the need for confidentiality in healthcare. This means that a medical professional is obliged to keep personal information about a patient confidential, and is only entitled to share that information in two situations: with the patient’s consent or if the disclosure is in the ‘public interest’. What is considered to be in the public interest is not always clear, and NAT is asking for more clarity from the Department of Health on this. Another reason why NAT decided to conduct a review now is that the NHS in the UK is currently undergoing a considerable change in how
personal information is recorded, kept and handled - the introduction of electronic patient records. All four nations of the UK have different systems and are at different stages. It is important to stress that these changes to record systems will
‘We are asking that NHS staff have improved training in confidentiality, and in HIV.’ not mean any change of the fundamental rules and principles regarding patient confidentiality. The issue is how these rules will be implemented within these changing systems and finding ways to ensure that confidentiality will not suffer as result of the changes.
Next steps
No systems are perfect, and the NHS is an enormous collection of organisations, with well over one million staff. But it is essential that people living with HIV trust their health service and feel secure that their confidentiality will be protected. As a result of our initial investigation we are asking that NHS staff have improved training in confidentiality, and in HIV (including why additional consideration should be given to it as a condition, especially issues around stigma and discrimination). We are also asking the Department of Health to confirm that if disclosures in the public interest happen, if at all, they only
happen in the most exceptional of circumstances. It has also become apparent that a simple guide is needed for people living with HIV, explaining their rights and what they should expect from the NHS. NAT will be producing this guidance in the Spring of 2010. We hope it will be a useful tool for you. For further information about NAT’s work on confidentially visit www.nat.org.uk If you have been affected by a breach of confidentiality in a healthcare setting and would like to share your story as an example, email: policyandcampaigns@nat.org.uk 23
TBAG wants PLWHIV
TB news: Elias Phiri
Local progress tackling TB
Local NHS services to tackle tuberculosis (TB) in England are improving, but worryingly nearly 1 in 5 (18%) TB ‘hot spot’ areas, and 6 in 10 (60%) areas overall, still don’t have a strategy in place to tackle the disease - according to a new report launched during the British Thoracic Society (BTS) 2009 Winter meeting. The report was compiled by the All Party Parliamentary Group on Global TB (APPG), the British Thoracic Society, TB Alert and the Royal College of Nursing.
The TB Action Group (TBAG) is a network for people who are or have been affected by TB in the UK. The group aims to provide a patient voice within the TB sector and to raise awareness of the patient experience amongst health professionals and communities affected by TB. TBAG work to increase the public profile of TB, provide peer support to people currently going through treatment and help improve TB services in the UK, based upon their personal experiences. The group is supported by TB Alert but independently decides upon their actions and areas of activity. Members meet quarterly in London, with expenses covered by TB Alert, and communicate via email and their online webspace. There are plans to start up another TBAG outside the Capital. For more information, please contact Tessa Marshall on 01273 234770 or via email: info@tbalert.org
The study analyses the results of a survey, conducted between August and September 2009, among 112 Primary Care Trusts (PCTs) in England, and reveals some positive progress in the delivery of NHS TB services compared with a similar survey in 2007.
The report Tackling tuberculosis in England: the PCT response to the challenge Second National Tuberculosis Survey of English Primary Care Trusts can be downloaded at: http://www.brit-thoracic.org.uk 24
TB Alert has launched a new awareness campaign; The Truth about TB at: www.thetruthabouttb.org The website describes the symptoms of TB, helps people identify if they are in a high risk group, and explains the treatment that cures TB. It also features a 10 minute information video, which explains TB through the stories of people who had and recovered from the illness. Health professionals, third sector staff working with people at risk of TB (BME communities, PLWHIV, etc) and PLWHIV who have been affected by TB are encouraged to visit the website. If you are a health professional, or a key worker working with people at risk of TB and would like to know more about The Truth About TB campaign, please contact Elias Phiri, Head of Awareness Programmes at TB Alert via email: elias.phiri@tbalert.org or phone 01273 234028.
Debbie Laycock, Co-ordinator of the All Party Parliamentary Group on Global TB, tells BASELINE about their work
Over 9 in 10 (93%) now have a senior designated ‘lead’ to tackle TB - nearly double the amount reported in 2007. The survey also shows, however, some worrying deficits in local NHS planning and delivery of TB services: 6 in 10 (60%) have no current strategy to tackle TB. No PCT consulted people with TB or ‘at risk’ communities in developing their strategy.
New TB Campaign
World TB Day- 24th March
The theme for this year’s World TB Day is “On the Move Against TB: Innovate to Accelerate Action.” For more information about World TB Day please visit Stop TB Partnership on www.stoptb.org If you are an HIV organisation interested to do some activities to promote World TB Day, you can contact TB Alert on info@tbalert.org or call 01273 234770. TB Alert will provide you with materials and advice to help you run some World TB Day activities.
The All-Party Parliamentary Group (APPG) on Global TB exists to raise the profile of the global tuberculosis epidemic (which includes the growing incidence of TB in the UK) and to help accelerate efforts to meet international TB control targets. The APPG recognises that TB is inextricably linked with HIV/AIDS. TB is the leading cause of death among people living with HIV in Africa and a major cause of death elsewhere. TB/HIV co-infection resulted in 500,000 lives lost in 2008. One cannot hope to control TB if attention is not also focused on preventing HIV infection. The APPG, through its MP and peer members, strives to raise awareness in the UK Parliament of the global emergency that is TB/HIV co-infection. Along with civil society partners, it pushes for the UK Department’s of Health and International Development to step up their activities to tackle co-infection. APPG members ask questions in Parliament and hold briefings. Last year we hosted a meeting in Parliament focused on how TB-HIV service integration is working on the ground and factors that affect access to treatment. We also work alongside the APPG on AIDS to bring together professionals working on TB and HIV. For more details go to our website – www.appg-tb.org.uk or contact: mike@results-uk.org
25
built to last
False positive-false hope
A South African body builder shares his remarkable story of living with HIV for over 25 years.
He advised me that it was going to take five to ten years before I advanced to AIDS adding that I needed to lead a healthy life-style and never tell anyone that I was an HTLV-3 virus carrier because of the social stigma. He told me to come back after six months for a (then) new and more conclusive confirmatory ELISA antibody blood test. It was distantly possible, he said, that I was a ‘false positive.’
It was December 1986, during my student days. A friend and I went to donate blood for the first time. A week later, my friend received a post card confirming that he had been successfully registered as a donor.
‘My veined upper arms measured 20 inches... Wherever I went people stared; some in awe, some in admiration and others in absolute disgust.’
On December 30th I received a letter stamped ‘confidential’ from the blood bank services stating that a ‘non-specific hepatitis virus’ had been detected in my blood, and I was not a suitable candidate for blood donation. The letter advised me to make an appointment with the City health doctor.
December 31st 1986
New Year’s Eve that year became a very significant day in my life. The City health doctor told me to disregard the ‘non-specific hepatitis’ bit in my letter, as it was just a way of getting me to set an appointment with him. What I had, he explained, were antibodies to the HTLV-3 virus. I suppose in today’s language he would have just told me that I was HIV positive. This, he explained, suggested that at some point in my past I had contracted the virus which could lead to AIDS. He asked me about my sexual history; I told him that from 1983 I had had numerous female sexual partners. He asked me if I had had any homosexual experiences and the honest answer was ‘no’. 26
It was hard for me to accept this bombshell. I was young, life had seemed promising and I was enjoying my tertiary education. I couldn’t help thinking, why me? I never went back for the ELISA test but started going to the gym and from 1987 bodybuilding became my religion. In late 1987 my girlfriend became pregnant and gave birth to my son the following year. I had my son tested for HTLV-3 antibodies and I was relieved to hear he was negative. Well, I figured that if I died at least I would be leaving behind my genetic footprint.
Relocation to Johannesburg
In 1990 I relocated to Johannesburg where I continued body building, a high protein diet, daily high doses of vitamin B, C and E, and steroid cycles. The cycles became more complex and varied but the doses remained very low in comparison to what competitive body builders were taking at that
time. I remained very healthy, not even suffering from the occasional sniffles. Life was good and the HTLV-3 issue just morphed into nothingness, as I convinced myself that it was a ‘false positive’. In 1994 I got divorced and started taking bodybuilding even more seriously. I started competing, won a novice competition and went on to do well in a provincial competition. By 1995, when I entered the national body building competition, I had increased my anabolic doses considerably, but still remained below the average doses of other body builders. I consulted my GP who did a full medical exam and blood tests every four months and not once did my results raise concern. My heart, liver and kidneys remained healthy and in appearance I seemed the epitome of perfect health. I did not drink alcohol, smoke or go clubbing. I slept for six to ten hours daily and always took a nap in the afternoons whenever I could.
Coming to UK
Late in 1996 I came to the UK. With the dream of participating in more international competitions, I started taking very high doses of steroids and other performance-enhancing drugs. The higher the doses, the bigger you grow. My veined upper arms measured 20 inches, whilst my overall body fat remained below 10%. Wherever I went people stared; some in awe, some in admiration and others in absolute disgust. Health wise I remained extremely fit and only had one common cold in December 1998. At this point I had completely forgotten that in December 12 years ago some doctor had given me only five to ten years to live. Life was good and I enjoyed it to the full.
Quitting bodybuilding
In 2000 I became introspective. On the one hand I had gained exceptionally good health from the body building lifestyle. But it was draining me 27
built to last continued financially. On top of that, I felt that my intellect had suffered ever since I took up competitive body building six years earlier. After weighing up all the factors I decided to quit altogether, cutting out the six to eight meals a day, as well as the anabolic steroid and vitamin cocktails. Crucially, I stopped going to the gym. What happened as a result? My muscular physique disappeared within a few months.
Sickness takes over
Returning to South Africa from the UK in early 2006, my health began to fail. It started with severe weight loss, general body malaise and dizzy spells. This came with episodes of severe night sweats. It was an insidious but not debilitating kind of illness, so I counted myself lucky that I was able to continue working and living independently. Later that year I became acutely ill. I was having severe chills and headaches. My body temperature would go up to 42°C and normalise after taking paracetemol. I consulted a GP who treated me for oral thrush and suggested that I should take an HIV test.
Starting therapy
Without delay I had an HIV test and, as I suspected, it came out positive. Subsequent bloods showed a ‘very high’ viral load and a CD4 count of just 43. I was duly commenced on antiretrovirals (ARVs) in January 2007: Viramune, 3TC and d4T. Right from my first day on ARVs, I started experiencing side-effects. Most disturbing of all was a permanent feeling of fuzziness, as well as an inability to concentrate for a long time and loss of 28
memory. I could not sleep well and the numbness, tingling and burning sensation in my fingers and feet (which I had before starting ARVs, but had been mild and tolerable), got distressingly worse. Two months of this and I started to feel that the ARV treatment was actually worse than HIV itself. In the end, I decided to stop the ARVs completely.
Switching therapy
Seven months after stopping ARVs and feeling relatively healthy, I spoke to a more experienced Consultant and she decided to restart me on ARVs but this time replacing d4T with AZT. Since restarting treatment I have not had any significant side-effects. I feel healthy, and my last CD4 count was 300 with an undetectable viral load. As I no longer body build or take anabolic steroids, I eat two or three healthy meals a day. I still take a tablet of high dose vitamin B complex and 200mgs of Vitamin C with each meal. I am single, solvent and lead a very simple stress-free life. My sexual behaviour has changed radically since I stopped competing. I only had one girlfriend briefly in 2006 and I have not had a casual sexual encounter since I was officially diagnosed as having HIV. I cannot take the risk of infecting anyone and I fear reinfecting myself with other strains of HIV. Though I feel lonely at times and wish I could find an HIV positive female partner, I am determined to stay single for the rest of my life. For company, support and encouragement I wish to correspond with other positive people who find themselves in my position: positive4476@yahoo.co.uk
healthy living Meat and two veg
We are always being told about the 5 fruit and veg a day – that seems a bit tough for some of us who aren’t that keen on fruit. But remember you can include fresh orange juice as one portion and red peppers are a great source of vitamin C. If fresh vegetables aren’t an option for you, frozen are a good enough substitute. Cook, steam or sauté them lightly/gently to keep the goodness in – don’t boil the living daylights out of them! Ever tried making your own soup? – remember potato counts as one veg too! Fresh fruit isn’t always as satisfying as custard and a steamed spotted dick (let’s be honest) but you could try to be sensible and add some berries to your hot cereal in the morning, or make a blended fruit juice yourself – getting you 3 more points in one go.
Nuts to vitamin E
Research has shown that even a slight deficiency of vitamin E can impede your immune function. Nuts and non-hydrogenated vegetable oils are also rich sources of unsaturated fats, substitute these for your saturated fats (such as hydrogenated oils which may weaken immunity and contribute to heart disease). So leave out products like: packet cake mixes, cookies, muffins and donuts (even fruit ones), margarines, frozen pastry party food, instant mash, frozen meals...all the snackie type food you might crave when you feel a bit low! Eggs, milk and Brazil nuts are foods that contain substantial amounts of zinc - zinc is essential for normal development of various types of immune cells, and research has shown that insufficient intake can decrease the body’s resistance to infection. Get more advice on diet, food related problems and treatment of conditions through diet from the British Dietetic Association. Telephone: 0121 200 8080 Email: info@bda.uk.com www.bda.uk.com 31
pozfem-uk PozFem UK is the National Voice for Women Living with HIV. It is co-ordinated by Silvia Petretti based at Positively Women and 25 regional coordinators from England, Wales, Scotland and Northern Ireland who are connected to local support groups. We are the only national network of women living with HIV in the UK and we were established in 2004. PozFem is a unique group of Women Living with HIV from all around the UK who want to be activists and make a difference. We are from a range of backgrounds, nationalities, lifestyles and cultures and with a wealth of experience, knowledge and information about living and thriving with HIV. As a network of Women Living with HIV from around the UK we understand what the issues are on a local front, which enables us to shape what is happening locally and nationally. We recognise a need locally and nationally to address issues faced by HIV positive women. These include:
- Access to support - Treatment and care - Building support and solidarity in the workplace and schools - Violence against women - Gender inequities
Membership is free and open to HIV positive women. Becoming involved will help to influence future policy, practice and services. Your views matter to us. Join us and play a role in supporting HIV positive women and in shaping decisions that affect our lives.
positive bloggers Edwin J Bernard
For those of you who miss his wonderful writing in NAM’s HIV Treatment Update or if you have a keen interest in following HIV criminalisation cases around the world, EJB can be followed at: http://criminalhivtransmission.blogspot.com Rated by South Africa’s Justice Edwin Cameron as “the best blog on the web” no less!
Adrienne Seed
Recently published her autobiography The Spider and the Fly, Adrienne spent many years living and working as an artist on Ibiza before returning home to rural Lancashire. She’s allegedly reached retirement age but you will find that hard to believe if you catch her blogging late into the night. Follow her at: http://www.adrienneseed.com
HOW DO WE MAKE A DIFFERENCE? We aim to hold regional and national meetings at which issues impacting on our lives will be discussed. We also have a discussion board where up-to-date information is shared and where you can participate in discussions on the issues that affect you: www.pozfem.proboards.com In order to address those issues, PozFem UK influences organisations involved in the support of people with HIV. We also collaborate with related community and voluntary organisations, health and social care agencies, education departments, trade unions, media, government bodies on a local, national and international level, to raise awareness of the issues faced by Women Living with HIV. We influence through formal consultation processes, presenting at conferences, workshops and seminars, media interviews, responding to issues relating to HIV and gender inequity. PozFem UK provides speakers, facilitators for training and coordinates groups of HIV positive women for consultation.
OUR VIEWS MATTER! To join PozFem you can download a form from our website www.poz-fem-uk.org
Silvia Petretti
Try to keep up with Silvia Petretti if you dare. She works tirelessly at Positively Women in London, where she set up POZfem, the UK Positive Women’s Network. She is community representative at the British HIV Association and also sits on the steering committee for this year’s World AIDS Conference in Vienna. Follow her at: http://hivpolicyspeakup.wordpress.com
Tell us about an HIV blog you love! Email: editor4baseline@hotmail.co.uk 33
Precious
The film Precious: has received six Academy Award nominations for its story of a black teenage girl who overcomes sexual and physical abuse as well as illiteracy, only to learn that she is HIV positive. During a heavy confrontation with her mother, Precious, learns that she contracted HIV from her abusive father, who died of AIDS-related illness years earlier. Much of the press attention surrounding this feature film has focussed on the remarkable performance of a de-glammed Mariah Carey, leaving its HIV angle little discussed. At cinemas nationwide now.
Catherine Yass: Sleep (Swamp) 2009 Sign up for the Global AIDS Alliance’s campaign to end Paediatric AIDS by increasing access to drugs to prevent mother-to-child HIV transmission and paediatric HIV treatment services from the current average of 30 to 40% to the globally agreed-upon target of 80%. http://www.globalaidsalliance.org
Turner Prize nominee Catherine Yass has produced Sleep (Swamp), a limited edition print related to her recent commission for Vital Arts at the London Chest Hospital. Yass told Baseline, “It’s about the places you go to in sleep or in daydreaming. To me this image suggests going on forever, both across into the distant horizon and down into the swamp”. Proceeds raised will support the work of Vital Arts and the Bobath Centre for cerebral palsy. Limited edition of 100 signed and numbered 70 x 55 cm, Giclée prints at £300 www.vitalarts.org.uk
45 years 45 lives Info Forum
Looking Back and Looking Forward, Evening of March 15. Mortimer Market Centre, London WC1E 6JB Speaker Chris Sandford. For more details call NAM 0207 840 0050
Sex Degrees of Separation
An online calculator helps you work out the number of people you have slept with by association. Be warned, it only permits you to have had 50 lifetime sexual partners. http://calculators.lloydspharmacy.com/ SexDegrees/ 34
David James has lived a life most others only aspire to. The title of his part travelogue part personal diary 45YEARS 45 LIVES gives some sense of what to expect. Caught up in the eye of the AIDS storm in the early 1980s, Lancashire lad David’s tale takes the reader around the globe. In his own words “This is my story of love, determination, fear, helplessness and happiness, and I hope it helps whoever reads this book to keep their dreams alive”. The Daily Express called it a “truly amazing story of one person’s journey through life.” What’s perhaps most amazing is that every penny of profit will be donated to the St Stephen’s AIDS Trust at the Chelsea and Westminster Hospital. Available in paperback on Amazon (where he’s shifted almost 5,000 copies in six weeks) and there’s a limited number of signed hardback copies available at the Kobler clinic at Chelsea Westminster Hospital in London. Speak to the volunteers at the clinic for your copy or order online. www.amazon.co.uk 35
WARNING: treatment news
Double check you are taking the right dose of your meds...
Robert Fieldhouse
The week before going to print, BASELINE received reports from two leading UK HIV activists who had not been informed about recent dosing changes to their meds. Both have spent months overdosing on HIV drugs.
Rosy Weston, Lead HIV/GUM pharmacist at St Mary’s Hospital in London told BASELINE, “New dosing recommendations, as in the case of oncedaily dosing of darunavir with 400mg tablets and new formulations, are common in HIV medicine. Ideally all dose and presentation changes should be discussed with individuals during their clinic appointment as well as the dispensing process. “In the case of both atazanavir and darunavir a special information sheet was produced by the manufacturers of atazanavir (Bristol-Myers Squibb) and HIVPA (HIV Pharmacists Association on darunavir to be given out during dispensing to explain the changes.” In one case, the activist has said that the home delivery of her medicines may have played a part in the mix up. 36
A once-daily dose of the protease inhibitor darunavir 800mg (Prezista) was as effective at suppressing HIV viral load as a 600mg twice-daily dose in treatment-experienced patients without pre-existing resistance mutations to darunavir. It was also less likely to cause lipid disturbances.
Rosy Weston reassured BASELINE, “HIVPA does work closely with the home delivery providers to inform them of any planned changes.” The second activist who collects her meds from clinic said neither her doctor nor the pharmacist mentioned that atazanavir had been reformulated and that she should take one pill instead of two. “I just kept getting more and more yellow but took solace from the fact that Alexander McQueen had sent models wearing yellow contact lenses down the catwalk.” Sarah Barber, an HIV specialist nurse at Beckenham hospital in Kent said “Sometimes people get it wrong from the start; taking the first month of meds and thinking the course is finished. My advice is always make sure you have got your prescription renewed even if it doesn’t coincide with your clinic appointment and double check dosing with pharmicist or nurse.” Neither St Mary’s nor Beckenham Hospital were involved in the mix ups.
Life expectancy normal diagnosed today, perhaps
if
All patients took darunavir along with two active nucleoside reverse transcriptase inhibitors (NRTIs). Discontinuation rates were similar; 13.9% (oncedaily) and 16.2% (twice-daily).
People who are recently diagnosed or who have high CD4 counts when they start treatment can expect to live a normal or near normal lifespan. Dutch researchers have followed patients diagnosed between 1998 and 2007 and measured their death rate over the next 3 years. This allowed them to make predictions regarding life expectancy. Someone diagnosed today aged 25 could expect to live for 52.7 more years. This is barely different to the Dutch national average of 53.1 years. The predictions rely on HIV drugs continuing to work, and do not apply to the large proportion diagnosed late.
At week 48, 72.1% of those taking once-daily darunavir had a viral load below 50 copies/mL, compared to 70.9% of those taking the drug twice daily.
New CCR5 antagonist likely for first therapy
The trial included 590 treatment-experienced patients.
Two leading UK HIV activists overdosed on meds
One activist reported taking twice the dose of the protease inhibitor atazanavir (Reyataz) for six months; the other took 1200mg of darunavir (Prezista 3 tablets once daily) for ten months. The story highlights the need for everyone with HIV to double check their medicine with a pharmacist, especially if your drugs are being home delivered.
Once-daily darunavir for treatment experienced
CD4 increases were also comparable between those taking the drug once daily or twice daily (100 cells/mm3 vs. 94 cells/mm3). The proportion of patients discontinuing because of side-effects was similar between the two groups (3.4% vs. 4.1%). But once-daily dosing appeared to be better from a lipid point of view; with fewer grade 2-4 elevations in triglycerides (5.2% vs. 11.0%), total cholesterol (10.1% vs. 20.6%) and LDL cholesterol (9.8% vs. 16.7%). Liver toxicity was also slightly less common with once-daily dosing.
Drug giant Merck, Sharpe & Dohme (MSD) has indicated that it will not submit a new drug application to licensing authorities for vicriviroc for treatment-experienced individuals. Vicriviroc failed to work better than a potent background regimen of three active drugs that were already working well. This does not mean that vicriviroc is not a potent drug; rather that it is becoming increasingly difficult for new drugs to show additional efficacy over and above what existing licensed medicines can achieve. This is even true among people who have been treated for many years and who have high levels of drug resistance. Vicriviroc performed well among a group of people who had only had two active HIV drugs in their background regimen, but added no extra value to the treatment of those taking three potent drugs already. Vicriviroc was well tolerated in the study of over 800 patients. It is likely MSD will now focus efforts on studying the drug in people who are starting therapy for the first time and seek a license for first treatment. 37
treatment news Robert Fieldhouse
Quad pill appears as good as Atripla A new co-formulated HIV pill that combines three HIV drugs plus a new, investigational boosting agent in a single once-daily pill was highly effective in a trial of previously untreated people with HIV. The new booster is called cobicistat.
Forty eight people received the new ‘Quad’ pill, containing the investigational integrase inhibitor elvitegravir with cobicistat as a booster, plus tenofovir (Viread) and emtricitabine (Emtriva), the two drugs in the Truvada combination. Another group of 23 people received the Atripla pill containing efavirenz (Sustiva) plus tenofovir and emtricitabine. After 24 weeks of treatment, 90% of participants in the Quad group and 83% in the Atripla group reached a viral load below 50 copies/mL. CD4 gains over 24 weeks were similar; 124 cells vs. 123 cells. People taking the Quad pill experienced fewer drug-related side effects compared with people taking Atripla – 35% vs. 57%. This was largely due to the lower frequency of central nervous system side-effects among people taking the Quad pill.
New booster on the horizon
Gilead’s new drug-level booster cobicistat at a dose of 150mg was compared to 100mg ritonavir (Norvir) to boost levels of the protease inhibitor atazanavir (Reyataz). These were taken alongside tenofovir/emtricitabine (Truvada). Fifty people took cobicistat and 29 took ritonavir. Cobicistat interferes with liver enzymes which process drugs such as elvitegravir and many protease inhibitors, allowing them to rise to higher concentrations. Unlike ritonavir, cobicistat is not active against HIV on its own. 90% of participants were men. The average age was about 35 years, and a majority were white. At 24 weeks, 84% of the people taking cobicistat and 86% of those taking ritonavir had a viral load below 50 copies/mL, suggesting that cobicistat boosts atazanavir just as well as ritonavir. A similar proportion of people in both groups dropped out early (8% vs. 10%, respectively). CD4 counts rose by an average of 206 cells/mm3 among people taking cobicistat and 190 cells/ mm3 among people taking ritonavir. Drug-related side effects in the two groups were similar, 20% (cobicistat) and 24% (ritonavir) group. Two people taking cobicistat dropped out early, as did one person receiving ritonavir.
‘Robin Hood’ tax is interesting, says Goosby The US Global AIDS Co-ordinator Eric Goosby has said US officials are seriously considering a new proposal from a number of non-governmental organisations for a tax on financial transactions to pay for global health schemes. See YouTube, (search for Robin Hood Tax) for a light hearted but somewhat chilling sketch on the proposed tax. 38
A 0.05% levy on financial transactions such as currency trades and financial derivatives might raise as much as $150 billion per year, campaigners say. The tax has already got the backing of Germany’s Angela Merkel and French President Nicolas Sarkozy as well as Prime Minister Gordon Brown.
Stopping smoking reduces heart risk says D:A:D HIV positive smokers have been shown to have a higher risk of cardiovascular events, compared with those who have never smoked. The extra risk drops after quitting and continues to fall the longer the time spent as a non-smoker. D:A:D (Data Collection on Adverse events of AntiHIV Drugs) is a large, ongoing observational study of more than 33,000 HIV-positive people seen at more than 200 clinics in Europe, Australia, and the USA. The D:A:D team divided participants into current smokers (35%); people who had never smoked (25%) former smokers (20%). About a quarter reported that they had quit smoking after entering the study. Seventy five percent were men, about half were white, and the average age was just under 40 years. About 25% were hepatitis C co-infected. The average time on antiretroviral therapy was about 1.5 years. Compared with people who never smoked, current smokers had more than three times the risk of heart attack and ex-smokers had almost twice the risk. Among the participants who quit smoking during the study, the excess risk dropped from 3.7-fold higher during the first non-smoking year, to 3.0fold after one to two years, and to 2.1-fold after more than three years without smoking. The risk of death was higher among current smokers, but the 1.3-fold risk increase was not as large as for the clinical events. The good news here is that the clinical benefits of stopping smoking seen in the general population appear to apply to people with HIV too.
Sideline: Treatment experienced: people who have taken a number of different HIV drug combination; sometimes until treatment failure Drug resistance: if you don’t take all your pills HIV may reproduce and the drugs may no longer work Protease inhibitor: a class of HIV drugs that inhibit HIV’s protease enzyme HIV viral load: the amount of the virus’ genetic material (RNA) in a tiny amount of your blood CD4 count: the amount of immune system coordinating cells in a tiny amount of your blood Lipids: blood fats such as cholesterol and triglycerides Antiretroviral drugs: drugs which inhibit HIV, which is a retrovirus NRTIs or nucleoside analogues: a class of HIV drugs that inhibits HIV’s reverse transcriptase enzyme which translates viral RNA into DNA. CCR5 antagonist: an entry inhibitor designed to block HIV from using one of the 2 surface coreceptors (CCR5 and CXCR4) the virus uses to enter CD4 cells. Robin Hood: a hero in English folklore; fabled for robbing from the rich and giving to the poor. 39
an uncharacteristic silence
“...it is a moral obligation for every gay man to be aware of his status...”
Jim Davis
I’ve been trying to understand why so many gay men dislike talking about HIV. It would be safe to assume that there is an element of fear motivating this silence and I suspect that comes with a heaped tablespoon of denial. Talking to some of my friends about it reveals a fascinating array of reactions. Some feign interest whilst shifting uncomfortably on their seat. Others will make more of an effort to engage but then there are some who are obviously so uneasy, they can’t wait to change the subject. Whatever the reason for this silence, it has to change. Of course HIV is not an exclusively gay disease, but as a gay man myself I believe we have a responsibility for anyone who is HIV positive. One in ten gay men in London tick that box and that rises to one in seven in Brighton. It is reckless and irresponsible to ignore those statistics. I also believe that it is a moral obligation for every gay man to be aware of his status and, at the very least, the basic facts about HIV and its transmission. For 30 years this evil virus has been part of our lives. It has been in and out of the news and public awareness has grown and faded through the years (often depending on whether or not there was a soap story line featuring the virus!) Despite the longevity and persistence of the global epidemic, the level of ignorance about the infection and the stigma faced by positive people remains scandalously high. 40
Thanks to a chain of events and the nature of gay sexuality at the time, HIV chose our section of the community to take its hold on the human population. That is nobody’s fault. Those who choose to stand on their soap box and claim it to be some kind of divine retribution can have their views. I’m not interested in archaic doctrines and prejudiced standpoints. I am the kind of person who prefers to reach for a mop when a bottle of wine gets dropped instead of screaming and shouting about who dropped it. One of my favourite symbols in the world is the Rainbow Flag. To me it is used by the LGBT community to signify how we are all so different yet united. Different backgrounds, wealth, politics, tastes in food & humour, as well as sex and sexuality; the list goes on. That is the very essence of humanity. Our differences should be celebrated and embraced, not judged and criticised. That is what creates a bond between anyone who stands proudly beneath that flag. If we were to use that bond to come together and speak and act as one, it has been shown that we can begin to make a change. The women who chained themselves to railings in the early 20th century refused to ignore the issues of social injustices they faced. Imagine how little the suffragette movement would have progressed if, for example, the Pankhurst women had just buried
their heads in the sand. They felt a connection to their sex and refused to simply accept their status as inferior because of it. Equally, they did not waste time in trying to work out how or why this was even the case. They got on with uniting women in a bid to make a change. As the brilliant Madeleine K. Albright said, “There is a special place in hell for women who do not help other women.” I feel that the same should be true in this instance. As a minority, gay men have had to deal with a lot of prejudice over the centuries. So what? We can learn valuable lessons from this but there is very little to be achieved by dwelling on it. It is being upfront, open and willing to accept others simply for who they are that has helped force such a fantastic shift in attitudes toward homosexuality over the last few decades. Let’s focus that power on normalising HIV.
It starts by simply talking about the virus with our friends and families. Then, over time we can slowly begin to revolutionise the way the world feels about this disease. People fear what they don’t understand so let’s talk about what we know and ask about what we don’t. Each and every one of us, particularly in the gay community, but regardless of who we are or whatever persuasion we might be, has a duty towards the future of HIV. Although individually we might not feel like it’s our fault or responsibility, collectively we can raise awareness and begin to reduce people’s fear. This in turn could prevent rising numbers of infection and, with enough effort, destroy the completely unjustified stigma attached to the illness once and for all.
41
HOW
WORKS $
1. Smart shopper
notes that the Gap (PRODUCT) RED apparel cost the same as other Gap apparel. But choosing the (RED) clothes means 50% of Gap’s profits will go to help eliminate AIDS in Africa.
2. Shopper buys the
Gap (PRODUCT) RED apparel. Gap sends a contribution of 50% of profits directly to The Global Fund – not to (RED).
(PRODUCT) RED is a trademark of The Persuaders, LLC and is licensed to (RED) partners. The goods and services of (RED) partners bear the (PRODUCT) RED trademark to support (RED).
THE GLOBAL FUND
$
3. The Global Fund
uses 100% of this money to finance HIV health and community support programs in Africa, with a focus on women and children.
INSPI(RED)
4. The contribution
helps a person affected by HIV in Ghana, Swaziland, Rwanda, Lesotho and other countries to be granted (RED) money in the future.
5. THE RESULT?
Shopper has some new Gap (PRODUCT) RED clothes and helped save a person’s life. They can continue to help when they choose (RED) the next time they shop or they can get INSPI(RED) to donate more money directly to the Global Fund at www.theglobalfund.org /en/donate/.
i-base Q&A Simon Collins
Question: Does HIV treatment work if you start with a low CD4 count?
Leaflet 2010:Advertisement
23/2/10
9:34
Page 1
Answer: Treatment will work at any CD4 count level. However, the further your CD4 count goes below 200, the greater the risk of you developing a serious illness. If your CD4 count is already low and you have been lucky so far in escaping an opportunistic infection, then starting now is important. If your count is above 200 now, starting before it drops below 200 is important. Most current guidelines recommend starting HIV treatment when your CD4 count is around 350, if you live in a well-resourced country like the UK and have access to newer medications that avoid you using old drugs like d4T (stavudine) or AZT (zidovudine).
Free Counselling
Advertisment for BASELINE
Email: counselling@gmipartnership.org.uk Tel: 020 8305 5002 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.
.
56% of patients who had started with a CD4 count less than 100
Even if your CD4 count doesn’t reach 500, you can still lead a long and healthy life: It is always better to start earlier if you have this option.
A recent study provides some guidance as to what this means in practice. It shows your CD4 increase on treatment is strongly correlated with your CD4 count when you started HIV therapy.
About 25% of people who start with a CD4 count under 50 cells may have additional health issues after starting treatment. This is called IRIS (Immune Reconstitution Inflammatory Syndrome). It can include illnesses such as tuberculosis (TB) and cytomegalovirus (CMV) that were present when you started treatment, but which the immune system was too weak to recognise and respond to before. This is usually easily managed and only occurs in the first few months.
. .
44
Horiz
gmi partnership
The main limitation from starting with a low CD4 count is that this will limit how high your CD4 count can recover.
For example, in this study, the following percentages of people reached a CD4 count of over 500: 95% of patients who had started with a CD4 count above 300 75% of patients who had started with a CD4 count 100–200
For some gay men unprotected anal sex is horny, intimate and feels natural. They also worry about the risk of HIV and other STIs. We can offer you a space to talk about safer sex and learn how to reduce risks, regardless of your HIV status or ability to pay.
Answer by Simon Collins, HIV i-Base
The GMI Partnership is funded as part of the Pan-London HIV Prevention Programme. © The GMI Partnership 2008
GMI-COUN-09boyzQrev3.indd 1
Please support and sponsor
TEAM BHIVA during the
Virgin London Marathon 2010 SUNDAY 25 APRIL 2010 To donate visit: www.justgiving.com / BHIVA
BHIVA is fundraising in support of the BHIVA Research Awards by entering a team into the London Marathon 2010 For further information visit: www.bhiva.org BHIVA Registered Charity No: 1056354
20/4/09 16:
help Haiti Robert Fieldhouse Hardship and the history of Haiti go hand in hand. Having thrown off French colonial rule and slavery in the early 19th century it became the world’s first Black-led republic and independent Caribbean state. But decades of dictatorship, poverty and unrest left it as the poorest nation in the western hemisphere. It’s also a land familiar with firsts. HIV took hold here first following its long confinement to the African sub-continent; arriving in Haiti, experts say, in the 1960s. People were dying with AIDS here long before the rest of the world knew that HIV existed. Haitian migrants to the US were among the first to die from AIDS in the US. Haiti was soon pegged as the main breeding ground, or possibly source of AIDS. The US Centres for Disease Control (CDC) caused the country great offense by listing Haitian nationality alongside haemophilia, homosexuality and heroin use as the primary risk factors for HIV — nicknamed “the four Hs.” At the time there was unfounded speculation that Voodoo ceremonies were in large part to blame. Haiti’s second-largest industry – tourism – collapsed, never to recover again. But Haiti has turned its HIV epidemic around. 46
In the early years it closed its private blood banks, whilst high adult mortality rates played their part in keeping HIV rates from reaching the heights predicted in the early 1980s. Untreated, someone with HIV here lives eight years less than an untreated American. More recently and somewhat more optimistically, well-coordinated HIV medicine programmes, education and increased condom use have prevented HIV’s resurgence, at least for now. HIV rates among expectant mothers dropped from 6.2 percent to 3.1 percent in the last 15 years. Haiti’s official HIV rate is 2.2 percent, according to UNAIDS. That was of course until the worst earthquake in 200 years in hit at 4:53 p.m. on January 12th. Hundreds of thousands were killed or gravely injured in the capital Port-au-Prince. Last May former US President Bill Clinton was appointed UN special envoy to Haiti. He was among the first to visit Haiti following the quake and made a second visit just days before his recent stent operation for chest pain.
It has provided continuous medical care since 1982 - never once shutting its doors or charging fees. Not even the earthquake can change that.
‘people were dying with AIDS here long before the rest of the world knew that HIV existed.’ Four of GHESKIO’s team members died, several were severely injured, and many lost family members or have been left homeless. Several clinic buildings suffered damage which made them inhabitable.
GHESKIO
GHESKIO treats 7,000 patients, (more than Chelsea and Westminster hospital in London, Europe’s largest HIV clinic).
It was founded just two months before the disease finally got its name.
Word soon spread that GHESKIO was “open” and increasing numbers of patients began turning up for antiretroviral drugs. Two days after the earthquake, some 1,000 refugees, many seriously injured, were camped in the field next to the clinic. The GHESKIO medics soon began providing emergency care to the refugees too.
GHESKIO centre in Port-au-Prince was the first institution in the world dedicated to the fight against HIV/AIDS. GHESKIO stands for the Haitian Group for the Study of Kaposi’s Sarcoma and Opportunistic Infections.
An emergency plan developed by medics before the earthquake in case of hurricane or political unrest was swiftly put into action. Patients at the clinic are routinely provided with an extra 2-week supply of important drugs. The doctors at GHESKIO are encouraged their plan is working. Emergency shipments of HIV drugs arrived at the clinic one week after the earthquake along with a team from PEPFAR (the US President’s Emergency Plan for AIDS Relief ). They continued to unload medications during the aftershock. Large quantities of meds are being shipped in from neighbouring Dominican Republic. Doctors have tried to contact their patients by mobile phone, but lack of electricity to charge their phones means that many patients are out of reach. Right now doctors estimate that one-in-five of their patients remains unaccounted for. The clinic has a partnership with Weill Cornell Medical College, which is collecting donations on its behalf www.weill.cornell.edu/globalhealth
47
help Haiti
SAVE LIVES IN HAITI
continued:
Cause Commandos
Luke Montgomery, a gay man who founded an AIDS orphanage in Haiti, has launched a fundraising website with his partner, Nate Guidas, to bring emergency medicine, food and tents to people in remote regions of Haiti. The website CauseCommandos.com uses 100 percent of its proceeds to purchase emergency relief supplies. Before starting the website, the pair had already raised more than $10,000 from family and friends in the LGBT community. Just 48 hours after the earthquake hit, the pair headed to Montgomery’s orphanage. All of the orphans were unharmed but the local hospital in Jacmel had collapsed. They have been buying and transporting much needed supplies to people that the large agencies have not reached ever since. Montgomery made world headlines in 1993 by interrupting President Clinton’s World AIDS Day address and accusing him of not doing enough to fight the epidemic. Watch a short film of their mission to Haiti on YouTube; search for “CauseCommandos.” Please donate at their website, if you can. Spread the word about them on Facebook and Twitter.
Haitian HIV peer support
A powerful mixture of Catholicism and Voodoo has contributed to pervasive HIV stigma and misconceptions about the disease in Haiti. Nobody went public with their HIV status until 1999. 48
That woman was 53-year-old Esther Boucicault. She subsequently founded the AIDS organisation Fondation Esther Boucicault Stanislas (FEBS), a group that provides medicines, condoms and support to over 500 people. In the current crisis they are being supported by Housing Works, a New York based HIV service organisation with broad experience of working with homeless people, who are currently taking donations to support its work in Haiti. www.housingworks.org The quake hit during a peer support meeting at SEROvie, Haiti’s leading HIV service provider. The group’s Executive Director Steve La Guerre said, “We were having our usual support group meeting on a quiet Tuesday afternoon when the worst happened. The sound was unforgettable. I can’t even describe the horror as the ceiling and the wall of the conference room started to fall and the chaos started. Fourteen young men with us were lost forever in the earthquake.” These groups need your help now more than ever. You can donate through an LGBT fund set up by the American Red Cross: http://american.redcross.org A poll carried out in mid’ February on US website poz.com revealed that 58% of their readers thought America was doing enough to support efforts in Haiti.
Your unused medicines can save lives! Medicines urgently needed: Antiretrovirals Medications to treat Opportunistic Infections, including: * Antifungals/Antimycotics
Please send your medicines to: AID FOR AIDS International
120 Wall St. 26 Fl, New York N.Y. 10005
(such as Floconazole, Mycelex, Spornox)
* Antivirals
(such as Acyclovir, Flamicovir, Valacylovir)
* Antibiotics
(such as Ciprofloxacin, Amoxicilin, Metronidazole)
* Antiparasite drugs * Antibiotics for dermatologic use * Antiallergics * Pediatrics * Dressings/Medical Supplies
Contact us with your questions:
Tel: +1 .212.337.8043 webmaster@aidforaids.org
In situations like these it is hard to believe there could ever be enough any of us could do.
For more information go to our website:
www.aidforaids.org
I N T E R N A T I O N A L
running low..? Jane Phillips 6. THE EDDYSTONE TRUST 36 Looe Street Plymouth PL4 0EB 01752 257 077 www.eddystone.org.uk
1. BODY POSITIVE NORTH EAST The Sida Centre 12 Upper Princess Square Newcastle upon Tyne Tyne and Wear NE18ER 0191 232 2855 www.newcastle.gov.uk/hivservices.nsf/a/bpne
2. GEORGE HOUSE TRUST 75-77 Ardwick Green North Manchester M12 6FX 0161 274 4499 www.ght.org.uk
05
3. LEEDS SKYLINE SERVICE 4th Floor, Gallery House The Headrow Leeds LS1 5RD 0113 244 9767 www.leedsskyline.org.uk
02
4. ABPLUS 29-30 LOWER ESSEX STREET B5 6SN BIRMINGHAM, 0121 622 6471 www.abplus.org.uk
2010 26-28 March 9-11 July 24-26 September 17-19 December
03
10 09
08
9. POSITIVE EAST 159 Mile End Road London E1 4AQ 020 7791 2855 www.positiveeast.org.uk
07 06
50
Residential Weekend
8. TERRENCE HIGGINS TRUST CYMRU Canton House 435-451 Cowbridge Road East Cardiff 01 CF5 1JH 029 2066 6465 www.tht.org.uk
04
5. WAVERLEY CARE 3 Mansfield Place Edinburgh EH3 6NB 0131 558 1425 www.waverleycare.org
Living Proof
7. BODY POSITIVE DORSET 24 Lorne Park Road Bournemouth BH1 1JL 01202 311166 www.bodypositivedorset.org
10. CARA The CARA Trust 240 Lancaster Road London W11 4AH 020 7243 6147 www.caralife.com
National Long-Term Survivors BM LTSG LONDON WC1N 3XX for people living with HIV/AIDS for the past 5 years or more
E: mail@nltsg.org.uk 51 W: www.nltsg.org.uk
a crazy situation Robert Fieldhouse In the past year, two major surveys of people living with HIV - one in the US and the other in the UK- have shown the same thing; people with HIV are not getting the mental health services they desperately need. The American Psychological Association teamed up with NAPWA (US National Association of People with AIDS), online resource aidsmeds.com and POZ magazine to poll just over 2,000 people with HIV in the USA. At around the same time, Sigma Research www. sigmaresearch.org.uk, the UK’s leading research group on HIV, published findings from its 20072008 survey What do you Need? It captured the views and experiences of 1,777 people with HIV in England, Wales, Scotland and Northern Ireland. In the US, the hope is that the results of the survey will seed educational programmes for people with HIV and healthcare providers, and will be used to convince the US congress that mental health services should be funded as part of HIV prevention and treatment services. There is absolute inequity across the UK to accessing HIV-related psychiatric and psychological support, lobbying to establish some minimum standard of care to ensure that the growing (and ageing) positive population in the UK have access to adequate mental health support is at an early stage.
The US picture
In the US, only 4 percent of survey respondents said they had NOT experienced psychological 52
symptoms such as depression or anxiety since being diagnosed HIV positive.
help. A little over one third reported using the HIV clinic to deal with these issues.
with anxiety and depression and had not had any help to address them.
Whilst three quarters of people experiencing mental health problems had told their HIV doc, only 2 out of 3 had been referred to a mental health specialist. A startling 89 percent of US respondents said they had experienced some degree of depression since their HIV diagnosis.
Friends were the main source of support for 40 percent of respondents. By contrast, only one third of respondents who reported mental health problems had spoken to their GP about it.
People had ideas about the kinds of support they needed to combat anxiety and depression. These included access to free counselling and psychotherapy, Cognitive Behavioural Therapy, life coaching, couples counselling, debt management counselling and community psychiatric nurses.
Seventy-eight percent reported having felt anxious, afraid or consistently worried about the future, and 65 percent reported problems with thinking and memory. Sixty-seven percent said they’d had trouble coping with their HIV diagnosis. Thirty two percent said they’d felt unsafe in their homes or relationships. Six percent of people felt too embarrassed to tell their health care provider, and another 6 percent feared being judged. Of the 1,500 people who were bold enough to raise the issue with their health care provider, nearly 28 percent were not referred to a mental health specialist. Unfortunately, of those who saw a professional for their problems, 30 percent said they were not satisfied with the care they received. Of those who weren’t satisfied, many said their mental health care provider had no experience dealing with HIV or did not understand their situation.
The UK picture
Of the 1,777 HIV positive respondents in the What do you Need survey, seven out of ten reported having problems in the past year with anxiety and depression, self-esteem and self-confidence, sex and sleeping. Counselling or psychology services had been used by just 44% of the respondents to the UK survey with anxiety or depression who had received any
The survey showed that over half the people who had experienced problems with self confidence, anxiety and depression had not received any help at all. What’s more, three-quarters of those having problems with sex, or alcohol and drugs received no help.
Sex
Thirty-eight percent of UK respondents with a current regular partner were unhappy about their relationship, with 40% having experienced problems in the last year.
Alcohol and or drugs
Twenty seven percent of all respondents had experienced problems with alcohol and/or drugs in the past year. Nineteen percent of all respondents reported problems with alcohol and/or other drugs in the past 12 months and had not received any help to address these problems.
Many respondents wanted healthcare professionals to be more sensitive to complaints about the side effects of certain drugs. Some requested easier access to anti-depressants and complementary therapies such as hypnotherapy and meditation.
Moving forward
Taken together, these surveys clearly show high levels of need for a range of mental health support services among people with HIV. As people living with HIV we should, as much as possible to be in control of our own healthcare. We should not solely rely on our doctors raising the issue of our mental well -being as many will not do it. Seek advice from your local support group about getting the most from your clinic appointments.
For 40 percent drug and alcohol problems had worsened in the past year. Overall three quarters of people with alcohol and or drug problems had not received any help. Seventy two percent of all respondents reported problems with anxiety or depression in the past year. Two thirds had received help with these problems but one third had not. Overall 23 percent of respondents had experienced problems 53
a crazy situation Robert Fieldhouse Jonathan, a BASELINE reader told us, “I’ve been living with depression on and off for years but have never said anything to my consultant because the 10 minutes I get just twice a year just isn’t long enough for me to discuss my personal problems.” Veronica Oakeshott, Policy Advisor to the UK All Party Parliamentary Group on AIDS, told BASELINE, ““The APPG is aware of the importance of good mental health for people living with HIV. We are collaborating with organisations such as NAT who are studying what can be done to improve access to quality services. We stand ready to press for sensible solutions, backed by the personal experience of people living with HIV.” Roy Brazington, a specialist HIV and mental health nurse at the Maudsley Hospital in London told BASELINE; “currently we are seeing clients with a number of different problems that include depression, anxiety, adjustment problems, substance misuse issues and an increasing number with severe and enduring mental health problems. We also see a significant number of people who are socially excluded primarily due to their immigration status and who present low in mood. Flick Thorley, an HIV and mental health specialist nurse at the Chelsea and Westminster Hospital is not surprised by the low proportion of people in the UK reporting having seeked help from their GP; “People living with HIV who experience mental health problems will frequently not feel safe to talk to their GP or the GP won’t have time. People with HIV do not meet the criteria for input from community mental health teams as they do not conform to the ‘Severe and Enduring’ spectrum of mental illness such as Schizophrenia and Bipolar Affective Disorders.” 54
So what makes HIV specific mental health services so vital? Thorley tells us “As part of Liaison Psychiatry they are not bound by postcoded healthcare as most of psychiatry is.” Brazington tells us, “the nursing staff within the team at the Maudsley is in a unique position in that we can be very flexible in where we see clients such as their treatment centre, at their GP practice, or in their home. This flexible approach to care ensures that we are better able to meet the clients needs.” So why is it so important that people living with HIV get specialist advice? Thorley explains “Health professionals providing psychological and psychiatric care for people experiencing HIV-related mental health difficulties need a good understanding of HIV disease and disease progression including a thorough knowledge of opportunistic infections and CNS (central nervous system) side effects,” Thorley adds “They also need to understand the potential complex drug interactions between HAART and psychotropic medicine and keep up-to-date with the frequent changes in HIV treatment.” Thorley believes there should be a minimum standard of care for positive people with mental health problems and there should be easily accessible, approachable, educated and understanding mental health services available for everybody. “HIV clinic nurses are good people to approach as a starting point if anyone has concerns about their mental health.” The last word to Brazington, “HIV treatment may have improved the lives of people living with HIV in a number of ways however mental health problems remain as people are living longer and meeting different challenges in their lives. Unfortunately, the stigma of the illness has not gone away.” The authorship of this article has been supported by an educational grant from Abbott Laboratories
HIV inclusive life assurance Kevin Waite
Having worked in the HIV sector for over 20 years, I’ve seen plenty of changes in treatments that are now available and their beneficial outcomes. However, the insurance industry has not progressed with the same speed and understanding. It’s difficult to know precisely why this is. One factor is probably that insurers, generally, are very reluctant to try out a new type of insurance product when they don’t have experience of its claims history. The number of claims made on a policy contributes to how it’s priced and what can be included in the cover provided. All the premiums from the sale of policies can be seen as going into a pot, from which all the claims have to be paid. If the amount being paid in claims exceeds the amount received from premiums, the insurance product is likely to be withdrawn, which would be bad news for those who need it. This is, of course, a chicken and egg situation. How can an insurer obtain a claims history for a policy if they don’t create it and see how it performs in reality? Happily, there are one or two insurers who are interested in developing new products and trying them out in the market. At first, they will be cautious in the cover the policy provides. The aim would be for the policy to have been priced right and provide a reasonable level of cover that’s useful but not so extensive that 56
claims exceed might the premiums received if the policy performs badly. If a good claims history is achieved, the policy is quite likely to remain on the
‘It has been only in the last three years or so that any insurance company would consider HIV inclusive life assurance.’ market and even expand its cover, so it becomes more useful to an increasing number of people. Because of my involvement in HIV service provision, I’ve been keen to develop new financial products that are HIV-inclusive. I started working at London Lighthouse as a volunteer in 1986. I established the Welfare Service and continued working at Lighthouse until 1997. Whilst there, I also helped set up Positive Discounts, which has now become ‘It’s So Easy Travel Insurance’, providing not only HIV-inclusive travel insurance but also life assurance. It has been only in the last three years or so that any insurance company would consider HIVinclusive life assurance but it is now possible.
Why get life assurance? Many mortgage providers insist on you having a life assurance policy. This ensures that should you
die, they are guaranteed to be able to get back the amount they’ve loaned you, which might not always be possible simply by selling the property. However, it’s more than likely that any life assurance policy they try to sell you will not be HIV-inclusive. If you have a joint mortgage with a partner, should one of you die without life assurance, the surviving partner would either have to sell the property or find a way of meeting the entire monthly mortgage payment. Having life assurance means that if you die, a lump sum would be paid out that could pay off the deceased person’s share of the mortgage (or even entirely). An amount could be included in the cover to pay for funeral expenses, as well as anything you might want to leave for a partner, friends, family, charity etc.
HIV inclusive is important Virtually all life assurance policies will not pay if the cause of death is HIV related. If someone has a ‘standard’ life assurance policy and they then die, it’s possible that there could be a disagreement between the insurer and the deceased’s partner or family if the insurer decides the cause of death was HIV related (directly or indirectly). It can sometimes be difficult to prove this 100% one way or the other. This is why it’s very important to have a policy from an insurer who is aware of someone’s HIV status
and has accepted to include this in the cover. Then, there can be no such argument.
How much will it cost and how do I get a policy? The premiums for HIV-inclusive life assurance are higher than standard life assurance because cover is being included for a pre-existing medical condition. However, the cost has come down a great deal in the last year – probably indicating that the insurers are beginning to obtain the claims history they need. If you’d like to obtain a quotation (in the strictest confidence – your details will not be passed to other insurers) please visit www.hivtravelinsurance.com and click on the link ‘Life Assurance’. If you don’t have internet access, you can call 0845 222 2226. Premiums are calculated taking into account your individual circumstances, for example, your age, height, weight, if you’re a smoker, your CD4 count and viral load level. From this basic information, the insurers will be able to tell you if they can offer a life assurance policy or not. If so, they will give an illustration of what they think the premium will be. Only if you wish to proceed, do they ask for more detailed information, in order to produce a final premium and offer of cover. www.hivtravelinsurance.com 0845 222 2226 57
caring with confidence
Confidential Support & Advice Confidential Barnsley’s 1st& local support Support Advice group, supporting people Barnsley’s local living1st with HIVsupport in group, supporting people Confidential our Borough living HIV in Supportwith & Advice our Borough Barnsley’s 1st local support group, supporting people living with HIV in our Borough
me me me positive about change positive about change
Telephone us on:
Telephone us on: 01226 320148 positive about change 01226 320148 Email: info@plusme.org Telephone us on:
www.plusme.org
Email: info@plusme.org
01226 320148 www.plusme.org
me www.plusme.org me here, for you
Email: info@plusme.org here, for you Company No. 06772710
Company No. 06772710
Charity No. 1129248
Charity No. 1129248
me here, for you
Company No. 06772710
Charity No. 1129248
Robert Fieldhouse talks to Anthony Okoro
+ve
+ve +ve
HIV +VE PEER SUPPORT in SOHO www.GMG.org.uk
WHAT WE DO:
.. . . .
Offer diverse, non-judgmental peer advice Provide space to relax and express yourself with other HIV +ve gay men Check-in, followed by discussion on common themes or urgent topics Discuss living with the virus and living as +ve gay men Non-funded, independently run and facilitated by established members
WHY DO WE MEET?
. . . ..
Let off steam about, and help find selfacceptance for being +ve Combat isolation of dealing with HIV by ourselves Talk about medications (starting/taking) and coping with side effects Discuss stigma or experiences of disclosure For friendship and fun, and socialise/network with other HIV +ve gay men
WHERE & WHEN?
.
Every Monday 5.30-8pm in Soho, London (apart from Public Holidays)
WANT TO ATTEND A MEETING? If you’re an HIV +ve gay man, we would be delighted to welcome you at one of our meetings. Use the contact form for meeting details at our website: www.gmg.org.uk/contact.php
Two out of three carers fail to recognise themselves as such. The job is tough; long hours, low or no pay, no holidays and it’s a physically and emotionally challenging role. It can knock your confidence and self esteem and six out of ten carers feel that their own health suffers because of it.
are they able to treat your civil partner as they would you husband or wife? What challenges does it throw up and how can they best be managed?” “To have an LGBT specific project that covers London is pioneering that will hopefully further recognition of LGBT issues in the future.”
About 5 million people in the UK work as non paid carers, saving the government a fortune. Last year the Department of Health put a significant sum of money aside to roll out the ‘Caring with Confidence programme’ which runs via a network of 32 providers throughout England.
The programme is also on offer to LGBT parents – another group who often fail to recognise themselves as carers.
But if you are an LGBT (lesbian, gay, bisexual or transgender) carer, chances are you may feel excluded from mainstream services or worry you’ll be faced with discrimination or prejudice. The good news is that if you are LGBT, live in London or the North West of England, are over 18 and provide unpaid care, you can access the Caring with Confidence programme with an “LGBT twist.” We caught up with Anthony Okoro from the West London Gay Men’s Project. He’s working in partnership with the GMI Partnership to offer access to the Caring with Confidence programme all over the capital. “It is not a training programme, as many carers have been caring for 10 years or more. For us to ‘train’ them would be offensive; it’s about sharing skills and experience with one another; it gets the participants talking.” “We look at dealing with healthcare professionals-
You’ll get your travel costs paid, the food will be prepared for you (for a change) and you’ll make a whole group of inspiring new friends.
What the course includes: Caring and Coping Look at the emotions involved in looking after someone. Coping with stress more effectively. Caring and Me Planning around your own health and wellbeing. Caring Day-to-Day The essentials of looking after someone day-today, from medication to emergencies at home. Caring and Resources Maximising your income and access to other resources which save you money. Caring and Life Think about how you juggle competing demands and how your caring role fits with the rest of your life. Caring and Communicating Uses real-life caring situations to help you get the best from communicating with other people. Join up by calling 020 8583 6677 or if you live in the North West of England call The Lesbian and Gay Foundation on 0845 3 30 30 30.
59
ENJOY, despair, extremes, RISK, danger, joy, orgasm, nameless sex, INTENSITY, anonymity, bonding, FISTING, illegal, secrets, PARTY, lies, double life, SEX, group sex, lube, HIV, addictions, INTERNET, excessive behaviour, bad results, EUPHORIA, come downs, regrets, ecstasy, LIES, encounters, HAPPINESS, weekends, late nights, COLD, hot, wet, SKIN, dick, repetition, ONE TIME GLORY, repeats, self harm, NORMALITY, distance, FRIENDS, new experiences, LIFE, living, frenzy, PASSION, chemical sex, DRUGS, joining, separation, gay, CASH MONEY, problems, habits, DEALERS, night time, DARKNESS, physiological, mind games, MANIPULATION, serenity, highs and lows, DIRTY, Tina, PAIN, torture, friends, SWEATY, excitement, calm, quiet, quantities, SENSUAL, relapse, CHRONIC, disinhibited, meth, STIMULANTS, increased sexual pleasure, DESIGNER DRUGS 60
plant food and sex Jeffrey Huw is one gay man who won’t be letting the mm-cat out of the bag Many gay men enjoy taking recreational drugs, otherwise known as ‘chems’. Some take them just for dancing others for hard sex; particularly fisting. The majority of these chems are illegal, expensive and difficult to get hold of. They are also dangerous for your health – particularly if you have a weakened immune system. There are a lot of men who say that they cannot have the sex they want or enjoy without taking relatively large quantities of drugs. Some get around the problem of finding a dealer by choosing to use ‘legal highs’. These may, for the moment at least, be purchased legally - and many of these alternatives have a chemical structure similar and related to certain are similar and related to some illegal drugs (meaning they may have a similar physiological or psychotropic effect on the body). Mephedrone or mm-cat is currently one of the most widely used legal highs by men who like their sex hard. A quick search on the internet reveals the closely related chemical structure of this legal high with crystal methamphetamine AKA ‘Tina’. There have been reports of people receiving emergency medical treatment after taking mmcat. Users report nose bleeds and severe chemical burns inside their noses and sinuses, paranoia, heart palpitations, insomnia and memory problems. There has also recently been a death related to mm-cat use.
A friend who uses it a lot told me; “I enjoy playing on mm-cat - I find it a reasonable substitute for Tina. Though the high is less euphoric, the physical effects are stronger, and I find I’m more in control. But it’s really important to keep hydrated - even more so than when using Tina.” “I have had hard come downs with mm-cat (less hard than with Tina though). I feel exhausted the day after and don’t recover fully for about 24 hours.” My friend, a well-educated middle class gay man living with HIV, whose sex sessions can last a weekend, knows the risks. The fact that he takes drugs is his business.
‘Lots of men say they cannot have the sex they want, or enjoy without taking relatively large quantities of drugs.’ Personally I’ve a deep rooted mistrust of excessive chem use in sex. Apart from the obvious danger to my health, it’s for the same reason I’m not into masks or hoods, or anything which disguises external reality. When I want to enjoy sex, when I am ‘turned on’ or excited by another man, it’s totally about me and the other guy I don’t see the point of taking chems to make yourself do something you wouldn’t otherwise do. My health is too important to me. I am just not into guys for whom hard sex is ONLY done with loads of drugs. When it becomes primarily about the drugs, haven’t you lost a really important part of the equation - the other guy? 61
the journey part one: diagnosis Julie Musonda
Here I was the wrong side of forty, married most of my life and never had a one night stand. I didn’t know what a GUM clinic was let alone ever feel the need to go to one. My husband had been playing away for years and I decided to ‘do the responsible thing’ and get myself checked. It took me several weeks to find the clinic open. After all the affairs my ex had confessed to, he would be lucky if he hadn’t caught something. He was a good-looking bouncer and as unfaithful as a rat!! In the end my husband and I split.
Straight and HIV+? You are not alone Peer support, social contact, advice, workshops First and third Wednesdays 6.30pm-8.30pm Email: str8talksg@yahoo.co.uk
I’d been single for three years and started seeing a guy from the gym and decided to get checked for Chlamydia and other things I’d often heard just the younger members of staff talking about. It wasn’t the most enjoyable experience of my life but certainly no worse than a smear test, or child birth for that matter! Proud of myself for being responsible, I smiled as I walked out of the door, never expecting to see them again.
Two weeks later my mobile rang and the clinic asked me to come back for my results. It was August 2005, a couple of days after my birthday, and although I hadn’t been well in the spring and early summer, I felt good. I took an hour out of my busy day and drove to the hospital. It was a beautiful sunny day, top down on my car, sunglasses on and a light tan from the summer. That day I became a number. All I remember hearing was “I’m sorry, I’m going to spoil your day, you’re HIV positive!” I missed the rest of that conversation except for the bit where they tried to convince me it wasn’t a death sentence. I can’t ever remember crying that hard before. Thank goodness for waterproof mascara! Within seconds millions of questions went through my head. What about my son? What about my parents? What about my business? How are my family going to handle my funeral? That was the first day of the rest of my life…… 63
Eat
Walk
Sleep Retreat yourself with a Baseline Challenge Weekend
Baseline has teamed up with Large Outdoors to offer you the chance to enjoy a weekend away in some of the greatest outdoor locations the UK has to offer. Enjoy the tranquil surroundings of the Gower Peninsula, the Lakes or Snowdonia whilst meeting new friends and enjoying two days of guided walks. Baseline magazine is offering these subsidised weekend breaks to all of our readers. There are even a limited number of free spaces available depending on the individuals’ circumstances. Please contact the office for further details. What you get: Two nights accommodation in an exclusively booked venue, breakfast on both Saturday and Sunday, three course evening meal on Saturday night and a packed lunch on both days. Plus tea, coffee and squash. We ask that you bring 2 buffet items for Friday nights arrival buffet. Two days of guided walks, all group safety kit.
The Cost:
hepatitis news Gay men’s hepatitis support Reduced liver fibrosis among groups coffee drinkers The Hepatitis C trust hosts a bi-monthly support group for coinfected gay men taking hepatitis C treatment. It provides emotional support and a safe space to support individuals through the complex treatment process. The group also engage and support one another with issues around stigma, disclosure and sexual behaviour and explore changes that may be needed to avoid re-infection. The group meets every two weeks on Tuesdays - 6.30 to 8.00pm.
Please call The Hepatitis C Trust 0845 223 4424 (10.30am to 4.30pm Mon to Fri) and ask to speak to Sam or Denis about attending the group. There’s a separate Gay Men’s support group every 3rd Wednesday of every month from 6.30 – 8.00pm. It’s fine for gay men with hepatitis C or HIV-HCV coinfection to drop in to this group.
Total cost after Baseline subsidy: £75 Not included: Personal drinks, personal walking clothes and transport to the location. However, if organising transport is difficult please contact the office as we may be able to arrange car shares for you. Personal Safety equipment which should cost no more than £8 to purchase. Places are strictly limited and are available on a first come first served basis.
To book call
Gareth: 0161 235 7272 Robert: 07886 159735 Or log on to: www.largeoutdoors.com/baseline.html
Dates:
March 12th - 14th, The Gower Peninsula, South Wales September 10th -12th, Snowdonia, North Wales November 19th - 21st, The Lake District
New BHIVA hepatitis coinfection guidelines
A panel of UK experts, mainly consisting of liver and HIV specialists, have recently published new guidelines covering the treatment of HIV-hepatitis coinfection. The new guidelines include updated discussion about screening and prevention of hepatitis B and C, clarification about when to use liver biopsy, management of acute (recent) hepatitis B and C infection, revised guidance on the management of chronic hepatitis C infection – including interactions with HIV drugs and management of hepatitis B and C treatment nonresponders or relapsers. The guidelines can be read in full at www.bhiva.org
Espresso, Latte or Cappuccino? People who drink at least two cups of coffee each day have been shown to have reduced liver fibrosis. Fibrosis or scarring of the liver occurs over time with a lifelong hepatitis infection and usually results in reduced liver function. The protective effect of coffee remained after researchers considered people’s age, sex, race, weight, liver disease and alcohol intake, and it was most pronounced in people with hepatitis C. Decaf coffee and other caffeinated drinks did not provide the same positive benefit. A number of studies have looked at the benefits of higher coffee intake and have found a link between lower rates of chronic liver disease, reduced risk of liver cancer and lower risk of death from complications of cirrhosis. Most recently in the November 2009 issue of the journal Hepatology, researchers reported that drinking three or more cups of coffee daily lowers the risk of liver disease progression for people with chronic hepatitis. It is possible that caffeine reduces inflammation. Inflammation is thought to cause fibrosis and cirrhosis. The researchers said, “...coffee may act by reducing oxidative stress, which may play a role in hepatic damage and disease progression.” 65
HIV (in Europe) in numbers
1.5 million: people
estimated to be living with HIV in Eastern Europe and Central Asia
‘We will never have a vaccine that protects 100% of individuals.’ Nobel Prize Winner Professor Francoise Barre–Sinoussi, Paris, France
850,000: people
estimated to be living with HIV in Western and Central Europe
5: the number of people who become newly HIV positive for every 2 who start HIV therapy
50% of people with HIV don’t know they have HIV
30% of people with HIV have
hepatitis C
8% of people with HIV have
hepatitis B
66
‘HIV, by itself, causes inflammation that leads to changes in vessels, the kidneys and the liver.’ Professor Juergen Rockstroh, Bonn, Germany
‘This is the time where we as healthcare professionals become advocates.’ Professor Jens Lundgren, Copenhagen, Denmark.