LAST Wednesday saw probably the last local authority sponsored HIV conference, ‘Positively Together’. Organised by the Sheffield Centre for sexual Health, the overwhelming mood of the event was of the need to be positive in the face of an uncertain future.

Unfortunately the headline speaker, Baroness Joyce Gould, was prevented from attending by illness, and so the conference was opened by Clive Skelton, the city’s sexual health champion, who argued for the benefits of his position whilst acknowledging that his uniqueness in English local government made it likely that it would not survive the oncoming changes and cuts.

The morning’s sessions were all keynote speeches, delivered by Dame Denise Platt, Sir Nick Partridge, and Dr. Christine Bowman, on the social care system, the healthcare system, and clinical progress and change respectively.

Both Dame Denise and Sir Nick focused on the radical changes being proposed by the new Coalition Government. Denise noted that the HIV/AIDS sector had itself emerged from a collection of community based organisations not unlike the vision for the future of social care and service provision being promoted by the Prime Minister. She noted that despite the axing of the AIDS Support Grant, NAT had been successful in securing named allocations for monies given to local government, and called upon HIV/AIDS organisations to ensure that they hold local government to account for spending the allocations on HIV/AIDS services.

Nick outlined the Government’s proposals for reforming the healthcare, and especially its focus on ‘geographical localism’, and the commissioning of healthcare services by GP consortia. Regard GP commissioning, Nick argued that the proposals create difficulties for HIV services, as they give no role for GP consortia in commissioning HIV services, despite the need for HIV services to be better embedded in primary care. He also noted that little coverage had been given to the Government’s Public Health proposals, although it contained a number of proposals that will impact on HIV prevention agencies such a THT, which is currently making £5m of cuts to reflect a 12% loss of income from government contracts.

Christine Bowman provided a more upbeat note, as she detailed the progress that had been made in stabilising people living with HIV, including reducing mother to child transmission, whilst also noting that this highlighted the difference in outcomes for those individuals who present late, and usually with extremely compromised immune systems and opportune illnesses. She also noted that antenatal HIV testing by midwives had proved to be successful, and argued that it should serve as a prototype for introducing HIV testing across the healthcare system.

Following a series of workshops, covering issues such as ‘HIV and stigma’, ‘the role of the voluntary sector’, and ‘Positive Living’, the conference returned to plenary session, with addresses given by Silvia Petretti of Positively UK on the needs and rights of PLWHIV, Mark Pitts of Sheffield City Council on the AIDS support grant, and closed with a barnstorming presentation by Barbara Allen, a GP from Manchester about how her practice works actively with HIV positive patients to enable them to manage their health.

Overall the conference was an interesting mix of pessimism, optimism, and uncertainty about the future. On the evidence of this conference, whether the Government’s reforms across health and social care will improve the lives of people living with HIV, aware or unaware of their status, seems to leave most people feeling very much the same.

Presentations from the conference are available at: http://www.sexualhealthsheffield.nhs.uk/news/6-3-positivelytogether.php

My first memory of Annie Lennox was watching an interview with her and Dave Stewart on the now infamous music show ‘The Tube’ back in 1983.

The pair had first met and collaborated in the ‘The Tourists,’ but it was the music of the ‘Eurythmics’ that would catapult them both to international stardom: they had just returned from the US where there single ‘Sweet Dreams Are Made of This,’ was number one in the Billboard Top 100.

In her late 20’s at the time, Annie had the demeanour of a ‘strong confident women’ her short  cropped red hair, androgynous plaid trouser suits and signature leather gloves,  made her a fashion icon, her look was copied by women everywhere.

But, the full impact of the HIV/Aids epidemic was unknown in 1983, and not even Annie could have known the ‘tour de force’ that she would become in her later years.

Today, Annie Lennox is not only famous for her distinctive voice with its raspy tones, but for her humanitarian work and in particular as a proud and loud HIV Activist.

SOUTH AFRICA

It all started when she was asked by Nelson Mandela to perform at the 46664 concert in South Africa in 2003, and later when she met Avelile a seven-year-old girl with HIV.  She had helped raise money for HIV/Aids in the past, but it was in South Africa that she got a ‘ wake up call ‘ on the seriousness of the pandemic.  Since then she has been a tireless campaigner raising HIV awareness: with a particular focus on woman’s rights, criminalisation and  stigma and discrimination.

Annie says “I work with Treatment Action Campaign in South Africa, which fights for the rights of people with HIV, the chronically poor with no rights or protection. It’s outrageous that women just die by the wayside, their children left as orphans – there are approximately 12 million AIDS orphans across Africa. Having seen it for myself, it completely changed my paradigm.

“I decided to focus on South Africa as that was the country that I had my wake-up call about the scale of the HIV/ AIDS pandemic. I shared a connection with Mandela, a man who represents the nobility of the human spirit. Yet even when Mandela spoke out about HIV, people didn’t take that call-to-action, so a country which had struggled with apartheid, now inherited this pandemic.”

In 2003 1000 people were dying every day from HIV/Aids in South Africa.

“I wear my HIV Positive t-shirt in solidarity with those who are affected or infected”

THE GLOBAL EPIDEMIC

In her role as UN ambassador to UNAIDS Annie is well informed on the progression of the epidemic and the challenges that lay ahead. Annie told Positive Pulse: “The new Global Report from UNAIDS shows that fewer people are becoming infected with HIV and that we have broken the trajectory of the AIDS epidemic. We have reached the first part of the Millennium Development Goals of halting and reversing the spread of HIV.

“In less than five years, we have crossed the half way mark towards providing medicines to HIV positive pregnant women, in order to prevent transmission of the virus to their babies securing better health for mothers and children.

“The fight is far from over. We still have a long way to go. We need to continue to strengthen our focus on the needs and rights of young women, who are particularly vulnerable to HIV.”

SING CAMPAIGN

Present when Mandela described the African HIV pandemic in 2003 as genocide, one in which women and children were the frontline victims, was a turning point in Annie Lennox’s life.

In 2007 Annie consolidated her work into the SING campaign and a single was planned. She invited 23 international female artists including: Celine Dion. Madonna. Joss Stone and the Sugababes and many more…They raised £100k from the single.

To date a total of over £1 million in donations have used to help SING to prevent the spread of HIV in South Africa. SING raises awareness in other countries also, including the UK; this is helping to increase global action to support infected and affected women and children.

THE ANNIE LENNOX FOUNDATION

The Annie Lennox Foundation raises money for projects supporting and educating women and children in Africa, who are living with HIV. ‘Universal Child’ – the last single releases, was inspired by Annie’s personal experiences in Africa and all the royalties went to the foundation.

“All children need loving care, safety, security, protection, good nutrition, a decent place to live, access to medical care etc, but millions of children receive none of these things. There is an incomparable disparity between the lives of children growing up in developing countries, and their Western counterparts,” says Lennox

ACTIVISM

Over the years Annie has lobbied politicians, given performances and interviews, and spoken at international events about HIV. She has used her unique voice to fight stigma and discrimination.

Her latest attempt to raise awareness was to take part in the international UNAIDS and Body Shop campaign ‘Be An Activist’ which is asking people to join the fight against HIV.

Annie was joined by other HIV activist whose stories have been documented and pictures taken by Ian Rankin. “If we no longer care, merely living in our own bubble with no conscience for others, guided by our self interest at heart… then what kind of society are we?” said Annie when she was interviewed.

An exhibition of these iconic pictures will be held at City Hall, London until the 10 November and the images will be used as part of the international campaign in Body Shop windows across the world throughout December. There was also redesign of the iconic Red Ribbon which you can buy from the Body Shop. All proceeds going to Body & Soul.

“Raise your voice today, be an activist, fight for: Zero new infections – Zero discrimination – Zero AIDS related deaths”

MUSIC

With a career spanning four decades, record sales in excess of 80 million and more awards and accolades than any other female artist – eight Brits, Golden Globe  an Oscar, and  the Red Cross Service to Humanity Award, are just some of them.

You might be forgiven for thinking, that by now this will have all  gone to her head! In fact you may be surprised to learn that Lennox comes across as someone who is rather humbled by her success.

This is apparent when she talks about ‘Island’ her new record label. “The team were so enthusiastic, and so excited to be working with me, and I was blown away that they felt like that. It feels very energized, and fresh and new. And that’s a great feeling for me.”

Born on Christmas Day, it seemed inevitable that Ms Lennox would eventually make a Christmas album. Christmas Cornucopia will undoubtedly take the Diva back to a simpler time when she was a seven-year-old girl, attending Miss Auchinachie’s choir in Aberdeen. She was being immersed in the cornucopia of Scottish folk songs, hymns and carols. “Through her I learnt all these beautiful carols and songs.” The album is clearly a homage to her Choir Mistress.

Christmas Cornucopia is out on Island Records: £8.95

If you would like to buy a copy click here

If you would like a chance to win a copy of the album then click here

To learn more about ‘A Christmas Cornucopia’ and Annie Lennox’s humanitarian work go to: www.annielennox.com

To learn more about the SING campaign go to:  www.annielennoxsing.com

To Learn more about the UNAIDS and Body Shop ‘Be An Activist’ campaign go to: www.thebodyshop.com

A message from Annie for Posiutive Pulse Readers

“Raise your voice today – be an activist – fight for”

Zero new infections – Protect yourself and your loved ones from infection. Know your status – get tested

Zero discrimination – don’t tolerate STIGMA and DISCRIMINATION towards people living with HIV – Speak up  - Take a stand – defend Human Rights

Zero AIDS related deaths – convince people in power to ensure that money is available for treating, caring and supporting those who need it!

There is no doubt about it, being HIV-positive can take you on a challenging journey to say the least, and the question of relationships and the issues they bring to the table will hit home for some, sooner rather than later.

For couples, a HIV diagnosis within the relationship will either make it or break it. For a singleton it will introduce a whole gambit of new dilemmas to deal with from: If, when and how should I disclose my status, to maybe I should just become celibate!

The root-cause of the problem is easy to pinpoint:  the misconceptions and myths that some people still hold about how HIV and  how it is transmitted are to blame. It is those misconceptions that can be so hurtful and damaging to a person that is living with HIV: after all it is worth remembering, there are a thousands of couples living in relationships were one is positive and one is negative -  or what the medical profession call: a sero-discordant relationship.

That in mind, and in my own small attempt to try and break down some of the barriers in both the HIV-positive and HIV-negative communities, I would like to introduce you to  Richard a young HIV-negative man with a very important story to tell…

My name is Richard. I am 19-years-old. I go out with a girl who is HIV positive and we have been going out for a year although I have known her for the last six. When she told me, I was shocked because of the way the media often portrays people with HIV. My girlfriend is smart, attractive and fun to be with, not an HIV sufferer or anyone’s victim.

I accepted her status because she is a human being and she is also the same person that I went to secondary school with. Sometimes it’s hard having a relationship with her but I think that goes for all women! The only difference is that she has a virus in her blood that has no cure. I worry about her health but she has been taking her treatment now for ages.

Most men my age think that you can’t have sex with someone with HIV. This is totally wrong you are not in any danger unless you don’t wear a condom but this applies whether someone is HIV-positive or not. There are other illnesses you can get like gonorrhea or syphilis. Or you may not get a virus, but end up being a teenage father instead: with no resources to support your child and all your dreams dashed. There is no difference between having sex with someone who is infected and someone who is not.

My girlfriend is healthy probably much healthier than me. Her medication keeps her healthy you never know she’ll probably live longer then me. Me going out with her has given me lots of knowledge… like most people think that when someone has HIV it’s automatically AIDS which is wrong. No one can catch AIDS and no one has ever died from AIDS and no one has ever died from AIDS. Unfortunately many generations of people have died from an AIDS related illness.

I have learnt that it’s hard for anyone who is HIV-positive – let alone a child or young person – to live in a world where people are narrow minded and not willing to learn the truth. If you don’t open your mind up to different things you will never learn anything. Due to treatments and medication available you can’t tell what someone with HIV looks like. They could be your next door neighbor your best friend your brother or even your mum.

I have also learnt that you can never tell who you might fall in love with, because there is no rule book telling us who we should or shouldn’t love. It is a learning experience and if I am still with her when we want children I also know that we can conceive children who are not infected with HIV. Of course I really hope that one-day scientists will find a cure that could help my girlfriend, but while there is no cure all we can do is be there for each other.

REVIEW: HIV iChart App version:1.0.0 by Max

Managing drug to drug interactions DDI’s when you are on antiretroviral treatment ARV’s can be a tricky business.

HIV drugs, like all medications, come with their own side effects and more alarmingly can sometimes interact badly with each other, everyday drugs and even herbal remedies.

Thanks to The University of Liverpool, checking to see how – a drug you have just been prescribed or are about to buy over the counter –  might interact with your HIV meds has just become a lot easier:  with the HIV iChart ver: 1.0.0 A NEW App developed for the iPhone and iPod.

For over 10 years, The University of Liverpool have been providing  an free reliable, comprehensive and  up-to-date, drug-drug interaction resource at www.hiv-druginteractions.org .

I have personally found the drug interaction chart on the site really helpful in the past. So having this info available to me at my fingertips on my mobile phone is going to be really useful.

The HIV iChart ver: 1.0.0 App has all of the features and functionality that website has to offer. Helping you to easily search for potential drug-drug interactions between HIV drugs and other medications.

After the initial installation, you are presented with the HIV drugs, listed alphabetically.  They are coloured coded in their relevant groups, (e.g. Protease Inhibitors, NNRTI’s etc). Simply select your current combination and tap next.

The next screen prompts you to choose the medication you want to check for a reaction (e.g. Tramadol, a common pain killer). Tap next for your results.

Results are presented as a “Traffic Light” system (red, amber, green) to indicate the recommendation.

A brief summary of the interaction is given, along with a grading of the quality of evidence (very low, low, moderate, high).

There is more information and suggestions if you click on the interaction itself.

Overall conclusion: This app is even easier to use than the website and is superb. It is available to download from iTunes free to your iPhone or iPod

Great for anyone living with HIV or working within the HIV sector.

click here to download form iTunes

www.hiv-druginteractions.org

Pros:

• Instant access to a database of useful information at your fingers and even on the move.
• It’s completely free
• Clever updateable button, for when you want to update your list
• Smart user friendly interface with alphabetical listings
• Good visually colour coded  result screen, traffic light-style, e.g. green = no clinical interactions, amber = potential interactions and red = should NOT be coadministered

Cons

Currently only available for the iPhone and iPod.

HIV BUDGETS are at a standstill. Despite that worrying fact, the year on year increases in those diagnosed HIV, means that HIV clinics are looking after more and more people living with HIV than ever before.

Because of this, people living with HIV will have to tap into GP services to look after their health needs, which are not strictly HIV related.

Sylvia Petretti, Community Development Manager at Positively UK is organising a series of workshops for men and womwn on how to get the most from your GP services and is also publishing a handout with practical ideas to help.

Here are some tips and suggestions.  Silvia would also like to hear from you about any suggestions you may have on getting the most out of your GP.

Know how to find your GP. Visit NHS Choices at www.nhs.co.uk and search for a GP by postcode.  Your HIV clinic will also have a list of recommended GPs. You must register with a GP in your catchment area, however within that you should have a choice of 2 or 3 GPs.

You can see the same GP every time. If there is a GP you feel most comfortable with in your surgery you can ask to see them. However, It may mean that you need to wait a bit longer.

Think about disclosing your HIV status to your GP. A GP is a doctor, and will be better able to look after your health if he or she knows all the facts.  This includes your HIV status.  If you don’t disclose there is a risk a GP can prescribe a medicine that interacts with your HIV treatments.  GPs and practice staff are bound by a confidentiality agreement; this includes keeping your HIV status a secret.  However, telling a GP can be a big step, so talk it over with someone first, a friend, support worker, or speak to someone at Positively UK.

Plan what you want to say and what you want to know before you go…and write it down.

Write down what your GP tells you, so that you will remember later.

Be prepared to talk to your GP and explain your situation, especially if it’s a GP you haven’t seen before.  If a GP is to look after your health effectively, they need to know a bit about you.  Don’t get annoyed if they ask questions that you’ve told a GP previously.

Know your CD4 count and Viral Load. You could have a note-book where you keep track of all your figures.

Know the name of the medications you are taking. Not only your HIV medications, but also any other ones you may be taking for other health problems. You can also write this in a special note-book where you keep your medical information.

Always be ready to ask questions when you are not clear about anything, or when you are unsure.

If you work full-time or are in employment, find a GP that offers flexible opening times:  after 6pm or on Saturdays.

Ask your GP what you can do to enable him/her to provide the best care for you.

Be open with your GP about what you like or what you are not so happy about the service – and offer any solutions – If you have an opportunity to do so.

If you are denied a service or even registration, always ask for a concrete reason why, this will not only give you a robust explanation, but it will also help you if you need to take any further action. A GP in your catchment area cannot refuse to take you on their register.  If they do you should contact your local PALS www.pals.nhs.uk or Positively UK who will help take your complaint forward.

If you are not happy with your current GP you can make a complaint and/or change it. If you need support to make a complaint you can do it with the support of your local.

Always wear nice and clean underwear. You never know…

The workshops will be co-facilitated by a registered GP.

• 11 November River House, Hammersmith from 6 pm to 8 pm
• 22 November Positively UK  Islington from 11 am to 1 pm
• 30 November Positively UK Islington from 6pm to 8pm
• 7 December River House from 10 am to 12 pm

To book your place call Positively UK 0207 7130444 www.positivelywomen.org.uk

PALS (Patients, Advice and  Liaison, Service). www.pals.nhs.uk or Positively UK 0207 7130444

NHS Choices  www.nhs.co.uk

IN JULY the Lib-Con Coalition published its plans for reforming the NHS in England.  While its proposals for reforming the welfare and benefits system have generated concerns from the HIV sector, there has been little comment, or information, about the ‘White Paper’ dealing with NHS reform, and more importantly, its potential impact on people living with HIV.

Positive Pulse asked Mark Platt, a leading HIV health policy advisor and independent public affairs consultant to unravel the detail and get to the bones of what are being described as the: “The most radical shake-up of the NHS since its inception.”

REFORM

In simple terms the document, ‘Equity and excellence: Liberating the NHS’, proposes a complete reform of how the NHS in England works. The document contains a number of proposals about reforming and changing the NHS, including allowing non-NHS organisations more opportunities to provide services.

However, the most radical element of the proposals, and the one that has raised the greatest interest and concern, is to hand over a large chunk of the NHS budget -  around £80 billion –  to new organisations called ‘GP consortia.’

These NEW organisations will be made up of GPs and be required to come together to form a ‘statutory body’, an organisation created by an act of Parliament and given legal responsibilities. These GP consortia, which may also have other health professionals and representatives on them, such as patient groups, will be responsible for commissioning and buying health care services for people living within a defined geographical area.

HIV CLINICS UNAFFECTED FOR NOW, BUT FOR HOW LONG?

Although HIV specific health services are unlikely to be immediately affected,  if the proposals are implemented there is likely to be some impact the future.

The white paper proposes that ‘specialist services’, the group which currently includes HIV services, will be overseen  by a new independent body called the ‘NHS Commissioning Board’.

However, a little known fact is that the number of people in the UK diagnosed with HIV now takes the condition out of the ‘specialist commissioned’ category. This means that technically it should be a condition that ‘GP consortia’ would be given responsibility for overseeing.

Since this change in numbers is recent, it is highly unlikely that this change in status will have an immediate impact on the commissioning, or provision, of HIV specialist services.

It is also certain that leading HIV organisations will lobby to retain HIV’s categorisation as a ‘specialist commissioned’ condition, and so in the event that nothing happens before, it is most likely that this will be one of the first decisions to be overseen by the ‘NHS Commissioning Board.’

CHANGE

The areas most likely to change are in ‘­primary care,’ healthcare provided by GPs and nurses, GP practices, clinics, or health centres. Under the proposals, the bodies that currently manage this part of the NHS, the Primary Care Trusts (PCT) are going to be abolished in 2013, along side the organisations that provide a regional overview for the NHS, the ‘Strategic Health Authorities’ (SHA).

It is this move from the PCTs and SHAs overseeing the NHS to GP Consortia doing the job that is likely to have the biggest impact on everyday care, the care that isn’t provided by specialist HIV clinics. In simple terms, GPs will be both payers and providers, and will have the responsibility for making sure their slice of the NHS budget is spent effectively, and that they don’t overspend.

THE GPs ROLE IN HIV CARE

One area where this might become a problem is with prescription drugs. Over the past few years GPs have been taking much more responsibility for the general care of people living with HIV. Although all HIV medications are provided by HIV clinics, most other medications are now prescribed by GPs.

Heavy users of medications are likely to be of greater concern to GPs than they are now. The question that’s being posed by many health commentators is: How can patients be sure that they’re getting the treatment that they need, and not the treatment that the GP can afford?

The GP consortia will also be responsible for commissioning hospital and clinic care, except where it falls under the definition of specialist care. They will be responsible for making sure that services that they commission, in clinics and hospitals, are good quality, safe, and cost-effective.

The cost-effectiveness of services is going to be vital, because as well as the changes proposed in the white paper, it also commits the NHS to saving £20 billion over the next four years.

POLITICAL GESTURING OR POLITICAL REALITY?

Secretary of State for Health, Andrew Lansley

All of this probably sounds very distant, and you may be thinking: What will it mean for me, as someone living with HIV? The simple answer is it’s hard to say, and the fact that the proposals are still being consulted on means that they may not be implemented anyway. Or if they are, the changes that actually happen may be very different from the current proposals.

The more complex answer requires a little bit of background. These proposals are the brainchild of the new Secretary of State for Health, Andrew Lansley. He has been waiting in to implement them for a long time, and is somewhat resistant to them being radically changed.

Although the proposals weren’t universally welcomed at first, the mood of most leading healthcare organisations, including the British Medical Association (BMA) and the Royal College of General Practitioners (RCGP), has changed over the past three months, from: ‘They won’t work’, to: ‘How can we make them work’. So on a balance of probabilities, and failing some major political hiatus, they will probably be implemented roughly in their current form.

The next stage of the process begins when the full consultation closes on 11^th October. After that the Department of Health will examine and consider the various responses, and use them to draft a new Health Bill, which is scheduled to be presented to Parliament this autumn.

CHANGE MAY BE A GOOD THING

Many organisations will then seek to have the text amended to favour their own interests, and many MPs will also use the three stage process of passing the bill to try and change it, or even to wreck it, according to their specific party’s perspective, or their own beliefs about the NHS.

Whatever happens in the discussion and debates over the Coalition Government’s proposals over the next few months, it is very likely that healthcare in England will change, as even the Labour leadership candidates have intimated that changes will have to be made to the NHS.

Change may be a good thing for people living with HIV; it could result in better services, in better communication between HIV specialists and GPs, and in more services being provided in non-hospital settings.

However, Kieran Walshe, Professor of Health Policy and Management at Manchester Business School has warned:”large scale NHS reorganisations are huge, and the intended or projected savings from abolishing or downsizing organizations are rarely realised.”  Walshe estimates that the proposed NHS reorganisation will cost between £2bn and £3bn.

If the changes result in turmoil and remove money from the NHS, then HIV services, along with many of the other costly ‘long term conditions’ services, may feel the pinch.

ENDS

The Government’s proposals for the NHS and healthcare in the UK can be found at: www.dh.gov.uk

Amena Zaman, Education and Outreach Manager at CWAC

THANKS to Carla Bruni-Sarkozy and Annie Lennox, we have recently learned much about the heart-breaking plight of children born with HIV on the African subcontinent.

But what of the children born with HIV living in the UK? You might be surprising to hear that there are around 1500 children and young people known to be living with HIV in the UK.

Mercifully these days, rates of mother-to-child transmission in the UK are less than one per cent, thanks to use of antiretroviral therapy in pregnancy and protocols for managing mum and baby during pregnancy, labour and in the early months.

But there was a time, not so long ago, when UK mother-to-child transmission rates were as high as 50 per cent. Back then, many more babies were born HIV positive. Many died but some survived and against the odds have now made the transition to adolescence and adulthood.

GUARDED

I wanted to get an insight into these young people and find out what it was like to live with the virus for all your life, perhaps only becoming gradually aware of you status during their teen years. How do these youngsters cope with everyday teenage life – having to keep such a big secret at such a precious age? How do they deal with going to school, having a crush on someone or going to college and getting a job?

To get answers, I turned to Children with Aids Charity (CWAC), one of the leading organisations working with HIV-positive children and young people in the UK, offering support, guidance and advice.

On my way to meet their Education and Outreach Manager Amena Zaman at their Old Street offices, I felt nervous about intruding. This closely-protected group rarely courts attention for obvious reasons. I knew that even my HIV status would not guarantee me preferential access to this vulnerable group.

As I was guided over to Amena’s desk I was struck by the many pictures of young smiling faces covering the walls. As we made our way up to the attic to do the interview I noticed a dilapidated office server (its side panel removed) was being cooled by a fan to prevent it overheating.

Clearly this was a charity that prioritised its work before its infrastructure unlike many in the third sector today.

As we settle into the interview I notice a duck suit to one side and asked what it was for?

It turns out that Amena is not shy at coming forward when it comes to fundraising: ”I was standing outside Finsbury Park Station in that suit shaking a bucket not so long ago, actually I wore it for walk for life as well,” replies Amena we a laugh and a grin. Unaware I was hatching a plan for a photo opportunity.

DISCRIMINATION AT SCHOOL

Discrimination at school is still a big problem for HIV positive youngsters, says Amena. A young person might be advised to keep their status a secret at school for fear of recrimination and some who may not know their status are reliant on the adults around them to protect their confidentiality.

In 2008, The National Aids Trust carried out piece of work that eventually saw the Department of Children Schools and Families change its guidance and approaches to HIV in schools for both HIV positive children and HIV positive teachers. Yet stigma and discrimination persist.

“I have had various phone calls since 2008 from school teachers saying ‘It’s not fair it’s wrong, we should know a child’s status, just in case another child catches anything,’ says Amena.

“Schools often can’t cope with a child who is HIV-positive. We still get calls about children being withdrawn from schools. I got a phone call from a primary school two weeks ago saying that two children had been moved out of their school because a teacher had disclosed their status.”

“Local authorities will always save teachers that make these breaches by pleading ignorance, they say ‘we are NEW to this’ even though they have the guidelines. They will then turn round and say that the organisations that have done the guidelines have not made them clear enough.” The NAT guidelines are crystal clear.

EXCLUSION

Amena is a trained teacher with a background working in exclusion, youth work and pupil referral units. This proved useful when CWAC started getting referrals from families with complex problems

“I found quite a few teenagers had dropped out of mainstream schools as young as 14. Many were excluded for being labelled badly behaved or having challenging behaviour, but I could see that the young people presenting at the office wanted to make something of themselves and achieve something.”

“These young people living with HIV were struggling to re-enter education or to go and find work because they didn’t have the basic skills. The first thing we ask a young person when they arrive is ‘what do you enjoy doing?’ and we find a suitable course that they like, say drama, music, IT or swimming and help them to achieve.

CWAC’s education and outreach programme works with many voluntary organisations to provide work experience in safe and supported environments and has become an integral and successful part of the organisations remit.

“Outreach is something that the government needs to take note of and produce more people like Amena.”

GOING THE EXTRA MILE

On the previous day, Amena had rushed to an East End court to sit with a young HIV-positive man being sentenced.

“I attended the earlier court case and had written a letter of support for the young man’s defence lawyer. On this occasion the outcome was a good, the boy received a suspended sentence and community order.

“He gave me a big hug and said thank you. I told him it was my pleasure, urged him to stay out of trouble and gave him a tenner because I knew he didn’t have any money and needed to eat.”

Christmas is another time when Amena and her colleagues go the extra mile. One 16 year old young woman referred to CWAC after losing both parents had been moved into a council flat on her own.

“On my first visit I found her sitting in the dark eating digestive biscuit’s . Here was a girl who has just lost her mother and was completely traumatised having to deal with bereavement and loneliness. She had a real sense of loneliness and was struggling to deal with issues that even an adult would have found hard to cope with.”

Amena ended up inviting girl, now in her second year at university, to share Christmas day with her family.

This approach is important for the young people who often come from one-parent families or who have no living parents at all. Many or have a fractured sense of family or lack strong foundations.

“One thing about Amena is that I can communicate with her when I need to as she does not cut off at 5pm like most workers,” said one of the young people at CWAC.

PEER SUPPORT

The notorious CWAC duck costume makes an appearence.

CWAC ‘success stories’ are encouraged on to become role models for their younger counterparts. Amena will link older children with younger ones and pay them for providing peer support.

“A lot of the young people referred to CWAC find it difficult to open up and talk. In time they do begin to talk to their peer groups and those they trust most, such as doctors that they have built up strong relationships with.”

HOW WORK EXPERIENCE CAN REALLY WORK

Amena told me about a 17 year old girl who was viciously attacked in the playground after a lecturer disclosed her status to fellow students.

The girl came to CWAC three weeks later saying she wanted to produce a booklet to educate others and was offered the chance to update the charity’s Voices of Children booklet. The girl learned about publishing and design software and the young people got a chance to talk about being HIV-positive.

Amena then proudly showed me another leaflet written and designed by another young person who did work experience at CWAC.

“This young lady came back to see us six weeks ago she is now 24 yrs old and she has finished a degree in marketing with a 2.1. When she first arrived as a teenager at CWAC she was very troubled and had been abandoned.”

“One of the things we insist on here is that the children take full credit for their work. The young people own the work and take ownership over it,” Amena added.

Outreach has been good, because it gives me confident in things I would be afraid to do,” said one of the young people that CWAC help.

POVERTY AND DEBT

Amena spends a lot of her time worrying if her charges have eaten or if they are taking their meds. Many struggle with poverty and debt.

“It can be simple things like not having enough money to buy decent food or travel that reinforces your sense of isolation. Some can’t afford to put money on the electricity or gas key so they can’t cook it, “Amena explains.

CWAC’s hardships fund is a core part of their remit. They award small grants for essentials like washing machines, baby start-up grants, children’s clothes, shoes, winter coats etc until the age of 18.

“One young person was recently re-housed recently into permanent accommodation and she is trying to do a university course. The council have repeatedly fined her for not paying her rent.  How is a 20-year-old at full time student supposed to pay £80 on rent when she has waited six months for her student loan grant to come through? “

“Financially without CWAC I would be dead. I had no money to live: food, gas electric, no doubt about it, outreach has always helped,” another of Amena’s charges told Positive Pulse.

NOT A 9 to 5 JOB

Amena’s job might be paid 9-5, but children often call her out of hours and some needs won’t wait and making an evening hospital visit to a 22 year old in hospital who has a CD4 count below 5, is sad reality.

“I have been in hospital 3 times this year alone and each time, Amena has been there for me throughout. I have never met any other professionals that would go out of their way to do what she has done for me. It’s all about quality not quantity, that’s why Outreach is something that cannot be ignored,” said another young person.

When I asked Amena what was the most important thing these young people needed, without hesitation she leaned forward and replied: “Love, acceptance, not to be judged, the basic human right to love and receive love from people. They need to be listened to. I think we all forget we have two ears and mouth for a reason and that’s because you’re meant to listen more and talk less.”

ENDS

I would like to personally thank the young people who allowed Amena to reveal some of your personal stories. I hope that this article will go some way in helping others to understand what it may be like to be born HIV-positive. JW

HIV FACTS

• There are approximately 1500 HIV-positive children/young persons  in the UK.
• Since the beginning of the epidemic 847 children have were born HIV-positive in the UK .
• HIV is not passed on by spitting, biting, small cuts or grazes, sharing utensils or toilets seats.
• There has been no known case of HIV transmission in a school.
• According to figures compiled by the CWAC it is estimated that there are approximately 19,000 HIV-affected children living in the UK today.

To find out more about the work of CWAC or to make a donation go to www.cwac.org

You can make a direct difference on how much the UK donates to The Global Fund’s ‘Born HIV Free’ by signing the petition found at: www.bornhivfree.org

To learn more about NAT guidelines for head teachers go to www.nat.org.uk

Raden Haamphunga

If you missed HBO’s “The Lazarus Effect” on channel 4 on Monday you can catch up on 4oD for the next 28 days.

This 30 minute film directed by Lance Bangs, chronicles the lives of four HIV-positive people living in Zambia over a 3 month period; Connie, Paul, Constance and Bwalya.

You will see how life-saving pills (ARVs) that cost around 40 cents a day transformed their lives as they share their stories. You will also meet Raden a four year-old boy who is less fortunate. This film brings home the devastation that Aids can, and still has on the people of Africa.

HIV/Aids has killed more than 20 million people in Africa. Today, thanks to reduced costs and increased access, more than 3 million people in Africa are now receiving treatment. However 3,800 people die every day in sub-Saharan Africa from the decease “The Lazarus Effect” film shows that this needn’t be the case.

Click here to watch “The Lazarus Effect”

www.joinred.com

During the second world war Hollywood starlets like Joan Crawford gave lipstick its powerful iconic status.

Eighty years later MAC cosmetics are using lipstick to assist in a different kind of war, the worldwide fight to combat the HIV/Aids epidemic and improve the lives of those affected by the virus in 67 countries around the world.

To fight that war MAC AIDS FUND has appointed Global music and glamour icons Lady Gaga and Cyndi Lauper as the new faces of VIVA GLAM.

VIVA GLAM lipstick and lipglass has sold 11 million units in past campaigns. Luckily for MAC Gaga and Lauper really love lipstick and will be outstanding ambassadors.

Last June Lady Gaga surprised 48 volunteers and staff at Body Positive North west by dropping in for a chat as part of the Orange Rockcorps scheme, which encourages young people to get involved with local projects for gig tickets.

The MAC AIDS Fund will soon announce a $2.5 million fund that will honour and benefit women who are living with the HIV/AIDS virus, and those working to curb the spread of the virus.

To buy a VIVA GLAM lipstick or lipglass 3.0g / 0.1 US oz  £12.50 go to www.maccosmetics.co.uk