SPRING 2014 – FREE Please take a copy
DYLAN GRAY FIRE IN THE BLOOD THE INTERVIEW ALSO INSIDE • Testing Faith | World News | Holistic Therapies
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REGULARS
FEATURES
Foreword – Daniel Charcharos
4
Dylan Gray interview
12
World News
6
Positive Eye
10
Testing Faith
20
What’s New at NAT?
16
Holistic Therapies
22
Newly Diagnosed
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Holistic Therapies and how they can help with long term conditions such as HIV
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FOREWORD: DANIEL CHARCHAROS
Welcome
to Positive Nation Dear Readers, Spring is finally upon us - did you get through the winter without being flooded?
What else do we have for you? We wrap all the worlds’ HIV news and take a look at a multi-faith group in London helping to tackle sexual health in the BAME community. Hope you enjoy the issue. Take care, Daniel and the PN Team with love.
DYLAN GRAY FIRE IN THE BLOOD THE INTERVIEW
SPRING 2014 – FREE Please take a copy
Anyway, we have a lot for you in this issue. The main course is an interview with Dylan Gray, the director of the documentary film ‘Fire in the Blood’. It’s a powerful film that brings home just how lucky we are to live in a country Editor: Daniel Charcharos with a national health service that provides life saving drugs to the people who need them - free of charge. Thank you. Every country should have this service - it’s a tragedy that they don’t. Politicians in countries that don’t have a free national health service should be ashamed of themselves.
ALSO INSIDE • Testing Faith | World News | Holistic Therapies
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Leaders in all spheres who are living with HIV should be encouraged, not coerced, to lead by example and disclose their HIV status. ~Nelson Mandela
DISCLAIMER © 2013. Positive Nation is published by Talent Media Ltd. Copyright of all images and articles remains with the publisher. All other rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the publishers. The mention,
Editor – Daniel Charcharos
appearance or likeness of any person or organisation in articles or advertising in Positive Nation is not to be taken as any indication of health, HIV status or lifestyle.
Sub Editor - Robert Ingham Publishing & Advertising Director – Darren Waite Art Editor – Daniel Charcharos (cover statistics from Concern)
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HIV charity sees 15% rise in people seeking financial help for basic living costs More than 15 years after modern antiretroviral medication transformed HIV into a manageable condition, lack of government support is leaving too many people with HIV facing a cycle of poverty, according to a new report published recently by Terrence Higgins Trust. The charity has revealed that, in the last year alone, it has seen a 15% rise in the number of people applying to the charity for small grants to cover basic living expenses including food and clothing. Terrence Higgins Trust’s HIV & Poverty report (www.tht.org.uk/poverty) is based on an analysis of nearly 2,000 applications made in 2012 to its Hardship Fund, which provides grants of up to £250 for people with HIV in financial crisis. The report, together with new figures for 2013, suggests that, rather than lifting people with HIV out of poverty, the fund is increasingly plugging the gap where statutory support in the form of benefits, Asylum Support, and local community services is failing to meet people’s needs.
According to the report, 46% of applicants living with HIV to the Hardship Fund in 2012 had a disposable income of less than £50 a week and 35% had no disposable income at all. The majority of grants were used to cover basic costs, including food (47%) and clothing (10%). The charity is also reporting that between 2012 and 2013 it has seen an increase in the number of applications from those whose benefits are under review (86% - 69 to 128 applications) or have stopped altogether (63% - 43 to 70 applications). The number of people who received more than one grant per year rose by 42% (from 305 to 433). The charity has set out five key recommendations for local and national government to help solve the issue: • The Government must ensure those who need support are fairly assessed and that benefits are sufficient to cover basic costs • The Work and Pensions Select Committee should hold an inquiry into the impact of welfare reforms
• The Department for Work and Pensions must ensure that people are supported to find sustainable employment suitable for their long-term health and wellbeing • The Government should aim to complete the asylum process within six months and must allow people to work after 30 days • Local Authorities must assess needs of people living with HIV in their area and provide adequate services The Poverty & HIV report is based on 1,918 applications to the Hardship Fund, as well as referrals to The Food Chain, a charity which provides nutritional support to people living with HIV. The Food Chain reports that 70% of people who use the service are living on less than £49 per week, with clients increasingly accessing the service as a result of poor diet associated with rising food prices.
BBC’s Inside Out finds GPs ‘complacent’ over HIV risk Complacency by doctors is leading to late diagnosis of HIV, a health group worker has alleged. BBC’s ‘Inside Out’ has found that 55% of those diagnosed with HIV in the Eastern region and the Midlands were diagnosed late, the highest rate in the UK. Cambridgeshire HIV counselling group worker Todd Thorpe said a number of people had come for advice after their GP did not recognise HIV symptoms. However, The Royal College of General Practitioners rejects the criticism. A spokeswoman said GPs do receive training provided by groups endorsed by the Royal College. Mr Thorpe, of Ramsey, Cambridgeshire, was diagnosed HIV four years ago after he was raped and said he struggled 6 | Positive Nation
to seek support. He now works with counselling group Dhiverse and offers training to GPs but claimed out of 96 surgeries, only two have signed up to training. Mr Thorpe said: “I believe they have become complacent. We’ve had guys go to the GP with their symptoms and not once have they been offered an HIV test.” Sharron Spindler, the chief executive of Dhiverse, said: “Sadly we have had a number of people who have come to us for support, who have been diagnosed late because their GP didn’t recognise that they could have HIV so didn’t recommend an HIV test. We have also had a couple of reports of GPs telling their patient that it was unlikely they were at risk of HIV because they were married. This shows that there is still
some misconception about how HIV is contracted and that you can’t be at risk.” Mr Thorpe added: “It took me two years to finally seek support and help, both for the rape and being HIV positive. I didn’t tell anyone. It just left me devastated.” Mr Thorpe claimed stories of late diagnosis - made after treatment should have begun - are common. He recently supported a man who waited 12 years to be tested. “People are still dying whether through fear, ignorance or burying their head in the sand,” he said. It is estimated by Public Health England that one in five people with HIV still goes undiagnosed.
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Hope as second baby born with virus is apparently cured with fast treatment in US study A second baby born with HIV may have been cured after being treated just after it was born, scientists say.
‘We don’t know if the baby is in remission … but it looks like that,’ said Dr Yvonne Bryson, an infectious disease specialist.
The girl was given antiviral drugs four hours after her birth in April last year to a HIV-positive woman at Miller Children’s Hospital in Los Angeles.
She is cautious about suggesting the child has been ‘cured’ ‘but that’s obviously our hope’, Dr Bryson added.
Tests later confirmed she was infected but now, almost a year later, the infant appears to be clear. She is continuing to receive treatment in foster care ‘and is looking very healthy’, doctors say.
The baby was born a month after a similar case was announced in Mississippi, where a three-year-old girl started HIV treatment 30 hours after birth. That was a medical first that led doctors
worldwide to rethink how fast and hard to treat infants born with the virus. The Mississippi baby girl was treated until she was 18 months old, when doctors lost contact with her. She returned ten months later and they could find no sign of infection – even though her mother had stopped giving her medicines. ‘These kids obviously will be followed very, very closely,’ Dr Deborah Persaud said. .
HIV protection gel is a step closer A gel that can be used by women after sex to protect against HIV is a step closer, according to researchers. Drugs applied three hours after infection could protect female monkeys from a type of HIV, US scientists said. The findings, published in Science Translational Medicine, could lead to new ways to fight HIV, which is continuing to spread globally. Experts say large clinical trials would be needed to test any new treatment, and condoms remain the best defence. Vaginal gels containing HIV medicines have had mixed success in human clinical trials. However, in the latest research, a US team took a different approach, testing a new HIV treatment in monkeys that has the potential to work after HIV exposure. They found the gel protected five out
of six monkeys from an animal-human laboratory strain of HIV when applied shortly before or three hours after infection. The Centers for Disease Control and Prevention in Atlanta, Georgia, which led the study, say it is a “proof of concept” in an animal model. Dr Charles Dobard, of the division of HIV/ AIDS prevention, said: “It’s a promising after-sex vaginal gel to prevent HIV infection. Studies still need to be done to look at the window [of opportunity] - is it six, eight, 24 hours?” So far, tests have been carried out in only a small number of monkeys infected with a combination of HIV and a related monkey virus. Experts say there are several obstacles before any new human treatment can become a reality.
Marijuana may protect the immune system against HIV and slow disease progression New evidence that chronic intake of THC, the primary psychoactive ingredient in marijuana, can protect critical immune tissue in the gut from the damaging effects of HIV infection has been reported in ‘AIDS Research and Human Retroviruses’, a peer-reviewed journal from Mary Ann Liebert, Inc. Patricia Molina and co-authors from Louisiana State University Health Sciences Center, New Orleans, United States, report that chronic THC administration was associated with greater survival of T cell
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populations and reduced overall cell death in the gut in monkeys, which is known to be a key target for simian immunodeficiency virus (HIV) replication and infection-related inflammation. The researchers present their findings in the article “Modulation of Gut-Specific Mechanisms by Chronic9-Tetrahydrocannabinol Administration in Male Rhesus Macaques Infected with Simian Immunodeficiency Virus: A Systems Biology Analysis.” This report provides mechanistic insights into their previous observation that THC administration attenuates disease progression in SIV
Dr Andrew Freedman, reader and consultant in infectious diseases at Cardiff University School of Medicine, said the gel contained a different class of anti-HIV drug, which attacks the virus at a later stage in infection, potentially allowing it to be used after exposure to infection. “This is proof of concept that such a topically applied gel, applied post-coitally, might be effective in preventing HIV transmission in humans,” he said.
infected macaques (AIDS Research and Human Retroviruses 2011; 27: 585-592). “To better treat HIV infection, we need a better understanding of how it causes the disease we call AIDS. We also need alternative approaches to treatment,” says Thomas Hope, PhD, Editor-in-Chief of AIDS Research and Human Retroviruses and Professor of Cell and Molecular Biology at the Feinberg School of Medicine, Northwestern University, Chicago, IL. “This study is important because it begins to explain how THC can influence disease progression in SIV-infected macaques. It also reveals a new way to slow disease progression.”
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HIV ‘cure’ for babies is being tested Canada
At least five Canadian children have been treated with a drug regimen some researchers are suggesting may be a cure for HIV infection in infants, Canadian researchers revealed. They said some of the children treated in this manner currently show no signs of infection, though they declined to provide specifics. Preliminary data will be presented at a scientific conference in May. “Some of the early treated children exhibited sustained virologic suppression, meaning that their HIV viral load continues to be undetectable,” said microbiologist Hugo Soudeyns from Ste-Justine Hospital in Montreal, Canada. Soudeyns is one of the investigators in a recently funded study which aims to see if starting at-risk infants on treatmentdose AIDS medications in the first 72 hours of life leads to better outcomes than starting the drugs after HIV infection has been confirmed. There has been growing excitement about this approach since U.S. doctors announced last year that they may have cured a baby of HIV by beginning aggressive drug treatment within two days of birth. The so-called Mississippi baby is now 3 1/2 years old and appears to be virus-free, two years after being taken off AIDS drugs.
The scientists — from St. Justine Hospital, the Children’s Hospital of Eastern Ontario in Ottawa and the Hospital for Sick Children in Toronto — have received nearly $2 million in funding from the Canadian Institutes of Health Research, the International AIDS Society and the Canadian Foundation for AIDS Research to look into what can be learned from studying the early treatment children. A team of Canadian researchers confirmed there have been at least five, and they are looking to see if there have been more. Dr. Lindy Samson of the Children’s Hospital of Eastern Ontario said it has been the practice in Canada for the past five or 10 years to begin early treatment of babies born to HIV-positive women when the mother’s infection was not well controlled by drugs. But Samson, who is also part of the research team, cautioned it is too soon to use the word cure in relation to this approach. “We are very focused on trying to understand whether early treatment in infants living with HIV infection may lead to an ability or an enhanced ability to control the virus,” she said. “However, we do not want to raise unrealistic expectations amongst the patients and their parents regarding any talk of cure, which is premature at this point in time.”
A leading Canadian AIDS researcher, who has a peripheral role in the study, is even more cautious in his assessment of this treatment approach. Dr. Mark Wainberg of McGill University in Montreal said most infants born to HIV-positive mothers are not infected with the virus, even when the mother’s infection isn’t controlled by AIDS medication. In the era before AIDS drugs were available, only one in four children born to infected women went on to be HIV positive, he said. Wainberg questions whether anyone can be sure that the babies treated with this regimen were actually HIV positive. Wainberg said the infants could have had some circulating virus at birth, but may not have been truly infected. “They may be claiming cure when in fact the infection was never really rooted in the classical way,” he said, adding that it might be difficult to prove or disprove whether this treatment approach worked. Soudeyns insisted the Canadian researchers are satisfied that the children they are studying were infected. “The children evaluated so far were diagnosed as HIV-infected using strict clinical and laboratory testing,” he said. “The clinicians on our team are confident that the children were properly diagnosed.”
Soudeyns said it even remains to be seen if the so-called “Mississippi baby” is actually cured. “The jury is still out.”
India launches HIV salvage therapy India has launched a third-line drug therapy for people living with HIV/AIDS and extended free anti-retroviral therapy (ART) to more of them by revising the eligibility norm.
Phase IV (2012-2017) here, Indian Union Health Minister Ghulam Nabi Azad said the third-line therapy would enhance longevity and improve the quality of life of patients.
The third-line therapy, sometimes called salvage or rescue therapy, is prescribed for people who have limited drug options left — after the failure of at least two drug regimens and with evidence of HIV resistance to at least one drug in each line or the latter cause alone. The highly expensive therapy will be provided free.
For receiving free ART, the minimum CD4count limit had been reduced from 500 to 350. The count is a measure of the viral load.
living with it.
Meanwhile, the government tabled the Human Immunodeficiency Virus Acquired Immune Deficiency Syndrome (Prevention and Control) Bill, 2014, in the Rajya Sabha. It seeks to prevent the spread of HIV/AIDS and protect the human rights of people
The Bill seeks to prohibit any kind of discrimination against the infected person — for instance, denial or termination of employment or occupation, unfair treatment, denial of access to any sector and forcible HIV testing.
Announcing these measures at the launch of the National AIDS Control Programme
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At present, India is estimated to have 2.39 million people living with HIV/AIDS.
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POSITIVE EYE
London - Walk for Life 2014
London’s Walk for Life is an institution! The event, which was begun and run by Crusaid until 2010. is now in its 25 year. When Terrence Higgins Trust merged with Crusaid in June 2010 they committed to protect the its legacy. Walk for Life continues to be a highlight of Terrence Higgins Trust’s fundraising calendar and raises money exclusively for the Hardship Fund.
The 2014 Walk for Life promises to be the most explosive yet. As ever, the 10k sponsored walk takes in some of London’s most iconic landmarks. The route is designed to be a fabulous parade through London, giving a voice and visible support to the thousands of people living with HIV who are in poverty. After the roaring success of the Really Wild theme last year this years theme is Heroes, Heroines and Villains! Starting and
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finishing in Bloomsbury Square Gardens, everything kicks off at 9.30am on Sunday 8 June, when check-in for walkers opens. They’ll be a group warm up at 10.30am, with the ribbon formally cut at 11am. The route will be well signposted throughout by stewards, and should take around two or three hours taking in some of the best sights in London. Once you’ve finished, collect your winning medal and wear it with pride! As a special ‘thank you’ to the walkers, this year your medal can also be used as a pass to an amazing afternoon or evening out in the city, with exclusive offers at a range of local bars and restaurants.
register on the day (Sunday 8th June) on arrival at the event start. This is dependent on availability of places left on the day. For more information please visit; www.walkforlife.co.uk Walk for Life has always been an incredibly important event for the HIV community. It offers a chance not only to raise vital sponsorship - but also to raise awareness and act as a public platform giving people a voice to grow and shape the nation’s response to the virus and remember loved ones. Get walking!
You can sign up by going online to www. walkforlife.co.uk until Thursday 5th June. Registration costs £7. You can also
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FEATURE: DYLAN GRAY INTERVIEW
FIRE IN THE BLOOD
PN interviews Dylan Gray, the director of an intricate tale of ‘medicine, monoploy and malaice’
Fire in the Blood is a film that tells the story of how Western pharmaceutical companies and governments aggressively blocked access to low-cost AIDS drugs for the countries of Africa and the global south in the years after 1996 – causing ten million or more unnecessary deaths. The film follows a improbable group of people who decided to fight back. Shot on four continents and including contributions from global figures such as Bill Clinton, Desmond Tutu and Joseph Stiglitz, Fire in the Blood is the never-before-told true story of the remarkable coalition which came together to stop ‘the Crime of the Century’ and save millions of lives in the process.
PN - What compelled you to make the film, how long did it take and what was the process you went through to make it? DG - The topic fell into my lap in a sense, but I became so deeply interested in it personally because it incensed me that this story had not been told and that the lessons of so many millions of unnecessarily sacrificed lives had clearly not been learned. In my view one of the
most important and shocking episodes of recent history was being lost, and there was no way that such a thing could be allowed to happen. I clearly wasn’t the best person to take on this task, but in the absence of anyone else, I decided to try. The active phase of making the film was roughly five years. The process started with research, identifying characters, doing preliminary interviews because so much of this was not adequately documented, beginning the shoot, reviewing and compiling
As the film makes clear, however, this story is by no means over. With dramatic past victories having given way to serious setbacks engineered far from public view, the real fight for access to lifesaving medicine is almost certainly just beginning. PN spoke to the Dylan Gray, director of the film, to find out the story behind Fire in the Blood.
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FEATURE: DYLAN GRAY INTERVIEW
archival material, editing and re-editing numerous versions, shooting some more, doing test screenings in a few different countries, locking the picture, taking the film out to a few festivals, then editing a little bit more till we felt it was right. PN - You were able to get some very high profile people to feature in the film (Desmond Tutu and Bill Clinton for example?) How easy was it to get them to be involved in the project? DG - The high-profile people in the film are not there just because they’re wellknown, but because they played important roles in the story. I had a good contact for Desmond Tutu, so that was not overly hard to schedule, although we were quite lucky because he stopped giving interviews not long thereafter. Bill Clinton took a fairly long time to book, about a year and a half, but he was a key player in all this, so I had no intention of giving up on having him in the film, and I’m very glad I kept at it. PN - Who do you think should be held accountable for “crime of the century”? DG - When I started the project I faced a choice of making a “name and shame” film which really identified the key culprits and called for them to be held accountable, or a slightly less confrontation approach which
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highlighted the systemic perversities which led to millions of people being willfully denied affordable, available and
In my view one of the most important and shocking episodes of recent history was being lost, and there was no way that such a thing could be allowed to happen. effective medication, and dying horrible deaths as a result. To be honest, my preference was initially for the former, but in interview after interview as I prepared the film, people whom I felt had played truly heroic roles in this kept saying the same thing: we are all to blame for this. Some more than others to be sure, but
Below: A still from the film
hardly anyone can look back at what happened and say in all honesty that they couldn’t have acted sooner and with more commitment and conviction. That is not to let anyone off the hook, but so many aspects of the situation which paved the way for this apocalyptic tragedy to occur have taken shape yet again, portending an even worse catastrophe, as hard as it is to imagine that being the case. Today there is no excuse for anyone to say “But I didn’t know”, so let’s see who steps up and acts to stop the carnage. PN - What is the best way for the governments to help make this issue better in the future? Is it governments’ responsibility to do that? DR - The real villains of “Fire in the Blood” for me are definitely the governments. Pharmaceutical companies tend to behave in a fairly predictable way as acquisitive, profit-hungry capitalist entities, but the system only functions as it does because of government regulations that create outcomes which favour giant corporations and their profit margins, despite horrendous costs in terms of death and suffering for human beings. Ultimately, as long as there are monopolies on medicine, there will be profiteering and millions upon millions of people will
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FEATURE: DYLAN GRAY INTERVIEW
PN - One statistic that I picked out from the film really struck me. “It took the UN 40 years to impose sanctions on South Africa over the issue of Apartheid, but only 3 years to impose similar sanctions on Democratic South Africa over HIV drugs.” - Have I got this correct? This really shocked me. Can you tell the readers more about this and what statistics really shocked you when making the film?
die unnecessarily every year. Monopolies can only be granted by governments, and it’s up to us to demand that essential and lifesaving medicines can no longer be subject to monopoly or other mechanisms such as “data exclusivity” which impede competition.
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DG - It is shocking, but a few days ago I met a French-Canadian filmmaker named Mathieu Roy at the film festival here in Mumbai. He made a film called “Surviving Progress” which deals with many of the issues of how ideas that serve commercial interests are fundamentally at odds with healthy human existence and are glorified and advanced by governments. We agreed that the more you dig into these matters the more the initially shocking becomes commonplace, and the more people are liable to dismiss what you say because they just simply don’t want to believe so
Above: A still from the film. Below: Dylan Gray
The real villains of “Fire in the Blood” for me are definitely the governments. many of these things are true. I think some of the numbers that shocked me as I researched the film were the devastating impacts on life expectancy that HIV/ AIDS was having in certain African countries, where an average lifespan in the mid-60s plunged to below 30 in just a few years’ time… also some of the incredible price differentials on what is charged for branded and generic drugs, drugs which in some case are made in the same factory in the same machines… The figures indicating how little basic or innovative research the drug companies really do didn’t come as that much of a shock, as I’d already heard much the same story from many people familiar with the industry long before I ever thought of making the
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FEATURE: DYLAN GRAY INTERVIEW film. But many audience members do find those numbers shocking, and are startled to realise what a glaring, bold-faced lie the narrative of massive expenditures for R&D as justification for monopolies and sky-high drug prices really is. PN - What reactions, that you¹ve had to the film, were most surprising? DG - I’ve actually been pleasantly surprised by the amount of support I’ve received from people within the pharmaceutical industry. Even those who disagree with me on certain points seem to feel the film is very important, thoroughly researched
and factual, and that the discussion it seeks to open is one we urgently need to have as a society.
PN - For many in the UK, their introduction to HIV/AIDS was the “Tombstone” adverts. What was yours?
Also surprising to me, on the flip side, was the unexpected harshness of the attacks leveled at the film and me personally by the so-called ‘liberal’ media in the US. People there are often fundamentally unwilling to entertain the very idea that the pharmaceutical narrative is actually very crude and absurdly easy to deconstruct, or that Democratic administrations are no better on these issues than Republican ones, and in fact are in many respects far worse.
DG - I remember the panic in the 1980s when AIDS first started making headlines, the stigmatisation of gay men and of Haitians, Ryan White, the AIDS quilt. Also walking down crowded streets in New York City and seeing them part like the Red Sea when a sickly-looking young man presumed to have AIDS walked gingerly along the pavement. PN - Have you kept in contact with many of the personal stories in the film? Can you give us any updates? DG - I’ve seen some of them. Musi and her two daughters came to a special screening in Cape Town, and that was very moving for everyone present. Mostly I have kept in touch by e-mail with various people. All are doing well. PN - Thank you for taking the time to make the film. It tells an important story. What do you hope it will achieve? DG - The principle objective of the project was first and foremost to make sure this incredibly important story was told, was documented and didn’t get lost. The fact that it has gone around the world, inspired and outraged so many people is really a testament to the absolutely shocking levels of cynicism, inhumanity and injustice it depicts, but also to the incredibly inspirational coalition of people who came together to break the blockade of low-cost ARVs for Africa and other parts of the global south. Even after spending so many years with this story, I continue to be immensely moved by their resilience, perseverance and unshakeable belief in what was right and needed to be done. I hope a new generation of similarly principled leaders will prevent such catastrophes from recurring in the years to come. Fire In The Blood is available on DVD from 24th March 2014
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Use your car to support people living with HIV Volunteer Drivers Wanted If you own a car and can spare 2-3 hours, one Sunday a month – then volunteer to drive for The Food Chain. We provide nutritional meals each and every Sunday for hundreds of people in London living with HIV. We rely entirely on volunteers to cook and deliver those meals – and right now we need more drivers. Mileage will be paid.
Visit
www.foodchain.org.uk/volunteer or call 020 7354 0333 for more information 16 | Positive Nation
The Food Chain (UK) Ltd – registered charity number 1003014
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FEATURE: THE NATIONAL AIDS TRUST
What’s New at NAT? HIV and confidentiality in the NHS In NAT’s latest report ‘HIV Patient Information and NHS Confidentiality in England’ we surveyed 245 people living with HIV about their experiences of disclosing their HIV status to healthcare staff and also asked them what they knew about how their medical records were handled and who had access to them. This is some of what we found: Confidentiality, your rights. Confidentiality is one of the core tenants of the NHS. You have a number of rights to confidentiality regarding your HIV status. - You have the right to expect the NHS to keep your confidential information safe and secure. - You have a right to see your patient records. - The personal information you provide to the local authority to apply for support services will be treated confidentially. This information will only be shared with people who need to know it in order to provide you with services. - You can also ask for copies of any letters about your health that are sent to other doctors. Despite these rights NAT’s recent report reveals that many people living with HIV are the dark about what happens to their medical records. Although there is widespread understanding amongst people living with HIV of the need for healthcare workers who are giving them care to know about their HIV positive status.
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Half of respondents to NAT’s survey did not know whether or not their HIV clinic records were kept separately from the wider records of the hospital trust. The NHS uses two different kinds of consent: ‘explicit’ and ‘implied’. Explicit consent means you have been asked and given your agreement for your personal information to be shared for a particular reason. For example, your GP may be asked to provide information about your health for an application for housing or welfare benefits, and will check with you before sending it over. Implied consent refers to situations where your actions show that you give consent to share personal information. For example, if your GP suggests a referral to another specialist and you agree, they may assume you consent for your details to be passed on to that specialist. In relation to this important concept of ‘implied consent’ for the sharing of personal information with other healthcare staff, 46% were unaware of this concept and a further 15% were unsure about it. If you are worried about your GP assuming implied consent to share your HIV status, have a conversation about it. Make it clear when you want to be asked explicitly for your consent to have your information shared. Our survey showed that when explained, most respondents seemed content with current confidentiality procedures – but there was a need for better information on these issues.
procedures and 46% had never had a conversation about it. For those who had received written or verbal information, 49% and 43% respectively said it did not answer their questions. There is an urgent need for clear information on how the personal medical information of people with HIV is shared and protected in the NHS and NAT will be developing a resource for this purpose. Confidentiality breeches in the NHS Unfortunately our research also found 40% of respondents said they had been treated differently or badly within the NHS because of their HIV positive status. Examples included asking people how they got HIV, blaming them for having HIV, refusal or delay in operating or providing treatment, inappropriate discussions around lifestyle, and being made to feel ‘inferior’ in some way. Such experiences were invariably not within the HIV clinic but in other parts of the NHS. Almost a quarter (22%) said they had experiences of breaches of confidentiality by healthcare staff. This often involved comments about the patient’s HIV status in public or personal records being visible. However, only one in five of this group made a formal complaint, underlining how difficult it is for people to complain a stigmatised health condition. Sarah Radcliffe, policy and campaigns manager at NAT
54% had never received any written information on NHS confidentiality Positive Nation | 17
Newly diagnosed? New questions?
CD4 counts also fluctuate depending on several factors, such as the time of day, whether you have eaten, if you have just exercised and if you have any other viruses. CD4 count tests are also not very accurate and it’s very unlikely that you would get two test results the same. An unexpected CD4 result is checked by looking at the CD4 percentage (CD4%). If the percentage hasn’t changed then there is nothing to worry about. Did your clinic mention this? When you are on treatment the most important monitoring test is a viral load test. This will tell you whether treatment is effectively controlling the virus in your body. After 3 to 6 months on treatment you would expect to have an ‘undetectable’ viral load (meaning less than 50 copies/mL It is common to gain weight in the first 6-12 months after starting treatment. This is especially true if you started with a low CD4 count and it is part of returning to good health. Sometimes people are happy with this, but if not, it is good to look at diet and exercise. It is also common for people to have more energy, including having a difference in energy and interest in sex after starting treatment. Some people will notice a drop in sex drive but for others as they start to feel healthier and have more energy this can increase.
Everyone who is newly diagnosed is likely to think about issues such as early treatment, CD4 counts and transmission. Simon Collins, from i-Base, helps us with Q&A on the topic. The website (www.i-Base.info) includes an online Q&A service where you can email questions that will be answered online or emailed back to you privately. There are now over 1500 online questions and answers that cover a wide range of subjects, including questions asked by those newly diagnosed. Question: Should I be worried about the drop in my CD4 count?
increased libido. Do the meds also increase weight and libido?
In September 2013 I was admitted to hospital with a CD4 count of 37 and I was also diagnosed with pneumonia (PCP). The doctor prescribed Atripla and Septrin.
I’m also worry about whether the meds will cause liver or kidney dysfunction?
In November 2013 my CD4 count was 381 but in January 2014 it went down to 309. What is causing this decline? Since I started using ARVs I’ve not missed a single dose of my medication. I am picking up weight at the same time (at the moment I am at 94kg) and I have an 18 | Positive Nation
Answer: The increase in CD4 count from 37 to over 300 over the last year is very good. This shows that treatment is working very well for you. The difference between the results in November and January, may be part of the natural fluctuation that is common. The November result could be a bit high and the January one a bit low because of the daily differences.
The meds you are taking are very widely used. Although all HIV drugs can have side effects most people find treatment relatively easy to tolerate. Routine monitoring with your CD4 and viral load tests will check both liver and kidney function. Question: Can I stop ARVs after birth? I am 17 weeks pregnant and I’ve found out, three weeks ago, that I’m HIV positive. Last week I went for my CD4 count and found out that it is only 159. I don’t like pills and I want to find out if I start taking ARVs now and monitor my CD4 count until I deliver my baby and then stop taking ARVs afterwards. Would that be a wise decision? Answer: In most countries, guidelines recommend HIV treatment when the CD4 count is around 350 or higher. This is whether or not someone is pregnant. But if your CD4 count is already lower than this, then treatment is also important to get your immune system as strong as possible before the baby is born. Treatment is important to make it less likely that your baby catches HIV. Because your CD4 count is already quite low, it is likely that your doctor would recommend staying on treatment. This is because even if your CD4 count goes very high on treatment,
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it is likely to drop again if you ever stop in the future. Rather than worrying about this now, it is better to try and find a way to make the next few months go well. Although it’s normal to worry about treatment, ARVs can help you to live a long and healthy life. Treatment is much easier to take than most people realise before they start and side effects are usually mild, and easy to manage. Also, if you’ve just found out you are HIV positive and were not expecting this. HIV can be a lot to deal with. This might be a good time to ask your clinic whether there are any support groups or counselling services that could help. Question: We are both HIV positive - can we stop using condoms? My girlfriend and I recently tested HIV positive. We are planning to get married and don’t have other partners. We don’t use condoms and wondered if this will affect our long-term health? Answer: Thanks for your question. I’m sorry to hear about your recent diagnoses, but I’m glad to hear you’re supporting each other and looking forward to getting married. If you and your girlfriend were having unprotected sex before you were diagnosed there’s not likely to be any new risk from continuing to do so. This is especially the case if you have been together for a long time and think that you may have the same type of HIV. The main risks from not using condoms are likely to be pregnancy and other STIs. Question: I’m newly diagnosed and starting treatment, what should I expect? I was diagnosed last week with HIV and it’s been a pretty tough since then. I’m 27, in good health, not unwell except getting colds and maybe ulcers in my mouth. My initial test results came back today as CD4 count 287 and viral load 790,000. The
viral load seems quite high and the CD4 count a bit low. I’ll be meeting with doctors next week once a resistance test has been done to see what treatment I can have. I’m quite worried about the viral count though, are there any common reasons as to why it may be this high? Also, upon starting treatment, I assume the viral load will go down quickly and that hopefully my CD4 will go up to over 500 in a few years? I’m quite scared at the moment as this is all new to me. It has been a huge learning curve and a kick up the bum to sort my lifestyle out (eat healthy, exercise more etc). I would be grateful for any advice. Thanks! Answer: I’m sorry to hear about your recent diagnosis. Finding out you are positive is never easy, and it’s normal to feel overwhelmed. Have you been able to tell anybody else about your diagnosis, and do you have any support? Interpreting the first set of CD4 count and viral load results is difficult and usually involves a quess at the most likely time you could have been infected. This is because it results similar to your could indicate two different situations. The first is that you may have been infected several years ago, and HIV has slowly progressed to the point where your CD4 count indicates treatment. The second is that you were infected relatively recently and are still in early infection. In this case, your CD4 count could be already increasing to a higher level and your immune system may be reducing viral load to lower levels without treatment.
So your risk history is important, together with whether you had any symptoms a week or two after the potential infection time. Getting a second set of test results is also important as if this is a recent infection you’d expect to see differences, even if this is only two weeks after the first set. A different type of HIV test can also help diagnose recent infection (within the last six months). If this is an older infection, then your CD4 count and viral load are both indications for starting treatment. In the UK it’s recommended that people start treatment if their CD4 count is under 350, or their viral load is over 100,000. With your current results there are lots of studies showing that the significant benefits of treatment outweigh the relatively small risks. Treatment brings your viral load down very fast. ARVs starts working immediately and within the first few days your viral load will start to drop. Your viral load is high, but about 15% of people start treatment with viral loads over 500,000. UK and US guidelines recommend that your viral load should be undetectable within 3 months but this might take longer if you start above 100,000. However, many people achieve this within the first month. Once your viral load is under control your CD4 count will start to increase. Your CD4 count is still relatively high so you are starting from a good point. Everybody responds differently to treatment but the average CD4 increases after starting treatment. If this is a recent infection, then you still have the option to start treatment, but might want to wait a bit longer to see how your results change over time. Many people start early treatment to be less infectious to sexual partner (s) and this is an option in the UK. You would expect the same pattern of response to treatment in terms of reducing viral load and CD4 recovery. It sounds like you are already making lifestyle choice for a healthier life that are important even if you are HIV negative. I hope everything goes well with starting treatment. Please let us know if you have any questions or concerns. Simon Collins
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Positive Nation | 19
FEATURE: TESTING FAITH
NAZ PROJECT LONDON LAUNCHES THE FIRST KNOWLEDGE SHARING PROGRAMME FOR FAITH LEADERS
‘Testing Faith’ aims to unify faith and sexual health in the Black, Asian and Minority Ethnic Communities Talking about HIV and sexual health is not always easy, especially in ethnic communities. One route to opening the door to these conversations is through people’s faith and that avenue is currently being explored by the BAME HIV charity Naz Project London (NPL). Faith and religion play a big part in the lives of people from the BAME community (see table 1). Faith leaders, and those associated with faith-based organisations, are in a unique position to encourage people to think beyond sexuality and to have rational and healing discussions in the community about HIV/AIDS. As trusted and respected members of the society, religious leaders
FAST FACT 63% of black Africans are diagnosed late, as compared to 47% in the general population.**
are listened to; their actions set an example and people often seek their advice. Their strengths and credibility, and their closeness to the communities afford them the chance to make a real difference in halting the spread of HIV/AIDS.
NPL has launched Testing Faith, a multidisciplinary initiative that brings together faith leaders, sexual health practitioners, religious organisations and people living with HIV. The course aims to raise the HIV and sexual health awareness of faith leaders and to engage them in the HIV response through trying to change attitudes and the behavioural patterns of their followers about the disease and encouraging HIV testing. The innovative programme was borne out of the fact that not only are over half of all
20 | Positive Nation
new HIV diagnoses in London from BAME populations but the proportion of people diagnosed late is higher amongst these communities than the general population. In addition, evidence suggests that since 2002 there was a 16 per cent increase in church attenders, predominately in black-led churches. Islam has also grown tremendously in the past 10 years with an approximate 341 mosques in London. Reverend Jide Macaulay from the House of Rainbow Fellowship said of the programme, “I believe that faith leaders and their communities should take part in ‘Testing Faith’ as a primary responsibility to all members of their communities. As it is shown and proven, for many decades HIV does not discriminate and we can no longer ignore the epidemic. I strongly recommend this important and urgent training.” Running from January through to March 2014, the two-day course is being piloted in London with a view to rolling it out nationwide following evaluation. The course contains two separate modules that are accredited by the British Society for Sexual Health and HIV (BASHH) and POSITIVENATION.co.uk
FEATURE: TESTING FAITH tailored versions of the course have been created for Christian faith leaders and for Muslim faith leaders. The first course for Christian faith leaders took place at NPL on 26 and 27 January. Many faith leaders heard real stories from people who live with the condition for the first time. They highlighted how an invaluable of an experience this was. “For the first time, I heard about psychological problems faced by people living with HIV in the community. I learned about the social isolation they face and the need of urgent response,” said Abde Ahmed, a Muslim faith community leader. Pastor Steven Mckenzie from the Stoke Newington Seventh Day Adventist Church who has attended the course said “I work a lot with young people and it’s just about educating and training them. All of us people of faith need to just live what we teach, what we preach. Today I felt a part of a family, I felt those two young men could have been my brothers. Another young girl Rachel, she shared her story and she sounded like my daughter, like the young people I work with. I pledge to work, volunteer here, to utilise every ounce of energy and strength to support and be even more open. I thought I was more open until today. It was so moving for me today to experience and to feel some of the pain and I thought I knew things but I realised I know nothing.” The HIV epidemic among BAME communities is fuelled largely by denial, silence and stigma. This has caused a lot of suffering among individuals, their families and the greater community.
living with HIV. I could see understanding and sympathy on their faces.” According to Public Health England, BAME communities have higher rates of individuals diagnosed with HIV late – especially among black Africans where 63 per cent are diagnosed late. People diagnosed late have a tenfold increase risk of dying within a year of diagnosis. In light of this, Marion Wadibia, CEO of Naz Project London said: “We designed a multidisciplinary programme where faith leaders will be encouraged to urge their congregation to test for HIV in order to increase HIV test uptake and counter the high rate of late HIV diagnoses among BAME communities”. To achieve this, NPL will support the faith leaders in organising HIV testing events in their worship centres or alternatively they will have to refer 10 members of their congregation to NPL’s premises or to the GUM clinics across the UK for an HIV test. Participants who successfully complete the course will attend a certification ceremony at the House of Commons where they will receive an ‘Investors in Congregations Sexual Health’ kite mark. The Testing Faith initiative also has the backing of the Elton John AIDS Foundation. “In Africa, faith leaders have been involved in important HIV education, prevention, testing and care efforts from the early days of the epidemic. We are pleased to support Testing Faith which is working with faith leaders in the UK as they come together to
FAST FACT Black, Asian and minority ethnic (BAME) people make up 13% of the UK population* but since 1995 account for 52% of all newly diagnosed HIV cases** support and influence their congregations about HIV testing.” Mohamed Osman, who is Head of Grants in Elton John AIDS Foundation, commented. There will be new dates added later in the year. For more information about Testing Faith or to register for the courses visit: www.testingfaith.org or contact Christabel Kunda or Maureen Kirigo on 020 8741 1879. Follow us on twitter @NazProjectLdn References: 1. ONS, Census 2011. **PHE, 2013 National Surveillance Data Tables 2.
PHE, HIV in the UK: 2012 Report
3. Table 1 http://www.brin.ac.uk/ news/2011/religion-and-politics-amongethnic-minorities-in-britain/
Veronica Williams from Seventh Day Adventist Church in Croydon noted “In the church as a whole HIV is a taboo and is not spoken about. Even when we talk about sexual health HIV is rarely mentioned. This course has helped raise my awareness of how HIV is contracted, how the medications help, and the highlight that there is a life after the diagnosis.” Put in words of a black African living with HIV who was part of the course, “This is a good step in the right direction. It enables faith leaders to reach out to members of their congregation who are diagnosed with HIV and are suffering from stigma and loneliness. Until this course, I have never been able to speak to faith leaders this openly about what I have gone through
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Above: Christian faith leaders for the first Testing faith programme delivered in January 2014
Positive Nation | 21
FEATURE: HOLISTIC
Holistic Therapies Glenn Stevens investigates how they can help people with HIV These days many people see holistic therapies as an expensive treat, when in fact they can play an important role in helping people and relieve many of the physical, spiritual and emotional symptoms associated with living with a long term condition like HIV. In Brighton, groups such as Peer Action, Sussex Beacon and Active LightWorks each offer the HIV community the opportunity to access lowcost holistic therapies. Glenn Stevens has invited some of the therapists in Brighton to say a little more about what they offer and how it can be of benefit to those living with HIV. Dan, Yoga Practitioner at Peer Action: The need to take care of one’s health and well-being may be a little more emotionally charged for someone who is HIV-positive. Sometimes the body may sometimes feel like a source of ‘locked in’ frustration, tension and worry; like the body has failed you in some way. Yoga is about the exact opposite of that. It’s about opening up the body, unpicking tightness and shaking loose restriction. Yoga can help people to find ownership, fluidity, strength and courage in our physicality, so that our inner being is less troubled by the limitations of the body. In the Peer Action yoga class, these inherent qualities are perhaps emphasised a little more at times. We focus often on physically empowering, “heroic” and uplifting poses such as warrior. If that sounds daunting, it shouldn’t, all the yoga postures/asana are practised within the safe boundaries of each individual’s abilities.
Periods of illness, and sometimes combination therapy, can lead to fatigue, nausea, digestive upsets, and extra tight muscles. Therefore any yoga class, aimed at people who have positive status should promote and encourage deep belly breathing and visualisations to relax the digestive system. Recuperative and restful postures should be included sometimes, and gentler modifications of all stronger asana should be offered to anyone who needs them. We want to promote a more loving relationship with the body, viewing it as friend not foe. At the Peer Action yoga class, I take care to include a range of different postures in each class. We welcome newcomers, irrespective of experience or ability. The class is open to friends, family and partners of anyone who is positive and by attending you will help to keep this important service alive. Clair, Shiatsu Practitioner at Active Lighthouse: Shiatsu is a therapy that connects deeply with others through touch. It works on the energetic system connecting with the meridians (energy channels/pathways) through stretches, rotations of the joints, palm and thumb pressure and still holding. It is a very sensitive and flexible technique and each treatment is a unique response to the particular person receiving the treatment. The aim is to bring the receivers energetic system into greater balance, bringing energy where it is lacking, dispersing areas where it has become blocked and increasing a sense of harmonious flow. Receivers will usually find a treatment very relaxing and nurturing. It has a great value in enhancing the receiver’s awareness of their own condition and a course of treatment can be a catalyst for self reflection and personal change. For those living with HIV a Shiatsu treatment can be an experience of being recognised and supported. The treatment focuses on the meridians where deep touch is most welcome and this feels very nurturing, giving a sense of a need met. Andy Swan, No Hands Massage at Peer Action: During my time as a sports therapist, I became aware of RSI (Repetitive Strain
22 | Positive Nation
Injuries) in my own hands. This inspired me to develop my sports therapy knowledge so that I could help people from a wide range of backgrounds. No Hands Massage puts the client at the centre of the therapy, which I’ve found particularly helpful for people living with long term conditions like HIV. Instead of asking where the client’s aches and pains are, the No Hands Massage treatment works on both the mental, emotional and physical needs. For example, the session begins by asking the client how they wish to feel by the end of session and they may reply, more energised pain free or looser in their joints. From here I am able to help focus the client as we work together in improving not only their physical wellbeing, but also their emotional, mental and spiritual, energetic side as well. Matt, Hypnotherapy (NLP) at Peer Action: The mind is incredibly powerful. I’ve studied Hypnotherapy Neuro-Linguistic Programming (NLP) and Life Coaching, and have first-hand experience of how these therapies have helped both myself and other people make useful and lasting changes in their lives. I believe that the therapy I’m involved with has the potential to benefit many people living with HIV. A new diagnosis can leave some people feeling scared, lonely, anxious and depressed about their future, and these are the areas where I believe we can work together to improve their confidence
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FEATURE: HOLSITIC
and self-esteem, set goals for their future and coach them towards achieving them. Adherence is also another area which I believe Hypnotherapy and NLP has the potential to help with. Through integrating these three therapies my intention is to help HIV-positive clients improve their adherence and feel good about the future. Phil, Meditation Facilitator at Peer Action: Meditation helps focus the mind. This has many benefits including; - Stress and anxiety reduction - Heightened self awareness - Being able to tune out distractions - Greater control of feelings and emotions - Helps you see and accept things for what they are making decisions easier - More energy to get things done The above gives people control over the endless flow of thoughts about the past and the future that can constantly flood minds so that they can enjoy the present. Meditating together with other people greatly enhances the experience. For people with isolation or social anxiety issues it provides a non threatening, unconditionally accepting social environment where you can talk to other people - if you want to - or you can just meditate and not talk to anyone, but either way you’re not physically isolated. Each week the Peer Action group concentrates on a different form of Meditation, from transcendental meditation, mindfulness meditation, chakra meditation, visualisation meditation, music meditation and movement meditation. Some of these techniques are rooted in Buddhist traditions; however, others are used in counselling and self-help techniques. Others are more purely about calming the mind. In fact, all of them boil down to focusing the mind and enjoying the calm and insight that comes with it. Steve Lane: Craniosacral Therapy at Sussex Beacon
wellness rather than pathology can also be really powerful for clients. In my work at the Sussex Beacon, I often see people who are feeling overwhelmed by their physical, emotional or domestic situation. If I can help them to feel safe and calm in their bodies, I hope they are more likely to respond and benefit from the other services on offer and hopefully ask for help if needed when they leave. Clients seem to respond well to the sense of empowerment in being actively engaged in the process from choosing the practitioner and type of therapy and being involved in deciding what they need in terms of frequency of sessions. Holistic Therapies are focussed on relaxation with many physical, psychological and emotional benefits. Physical and emotional stress weakens the immune system, so holistic therapies like Craniosacral Therapy, a hands-on body therapy, with the practitioner making light, sustained contact through the client’s clothing. The gentle touch of cranial work helps the body to feel safe and relaxed so that the mind can become more peaceful. This helps the body sense where tension is being held in muscles and how feelings of stress and anxiety are expressed in the body, so that they can be transformed and released. Equally, massage actively works to help clients feel more grounded and calm, supporting the body’s natural resources for maintaining health. For some clients, the physical touch of a holistic practitioner offers relief from some symptoms like anxiety or pain, not to mention the benefits of contact in a non-judgmental, empathic relationship. Having the time to reflect on feelings and sensations can also offer clients insight into how they are living their lives and whether they want to make lifestyle changes. Feeling the benefits of relaxation often inspires people to adjust their sleeping pattern or diet, to ask for emotional or physical support or make more profound
changes in their lives. Helen, Touch Therapist: “Holistic energy medicine” has been my soul’s passion to practice for 24 years. I thought, “what catches my eye and inspires me most in an article about touch therapies? It’s how the therapies work and the authentic sharing of people’s experiences! I’ve heard patient tell me some amazing things, for example; “When you touch my back, all the tension dissolves away, I contracted HIV through needle sharing and had very low energy levels. Since having weekly reflexology, I now feel able to volunteer at a peer support group for heroin addicts” and “My back felt twisted and blocked around the swelling. Now I feel taller” (hospice client with lypodystrophy). Some of the services I offer that can be helpful for people with HIV. For example,. Hand & Foot Reflexology and Massage increases flow of Oxytocin, induces relaxation, boosts immunity & sleep patterns - which allows the body’s intelligence to achieve equilibrium more efficiently. Energy Healing and Flower & Gem Essences help change the crystalline energetic structure to allow more light into our cells and transform the density of negative thoughts, feelings and physical illness. Meditation strengthens our ability to ground & centre ourselves, quieten our mind and “let go” of negative thoughts & feelings that are no longer serving our highest good, thus allowing more peace into our daily experience. To find out more about these topics and the services available in Brighton, please visit; Peer Action (www.peeraction.co.uk), Sussex Beacon (www.sussexbeacon.org.uk), Helen Dodds (www.helendodds-therapy.co.uk) and Active LightWorks (www.activelightworks. org)
The NHS is a very time-limited system so interactions are often brief and focus on the medical or pathological priorities of the client. While these are obviously important, holistic practitioners can offer more time and focus on the well-being of the client as a whole person. This undivided attention is in itself therapeutic, and it can also help reframe how clients think of their bodies from being defined in medical terms (i.e. diagnoses, blood counts and medications) to more human terms (i.e. relational, physical and emotional feelings). Having a focus on
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Positive Nation | 23
“Let’s talk about me and my options” “I’m finding more ways to work m a e t e r a c h t l a e h y m h wit and to live a healthier life with HIV” My Health Matters is an easy-to-use App for iPhone that helps you track HIV symptoms and HIV side effects, so you can discuss them with your healthcare team. Download it from This App and website were developed by Contributing to HIV care for over 25 years
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Date of Preparation: February 2014