We’ve been interviewing for a new communications manager at work. The process has been interesting and has made me think about how lucky I am to work at a charity that is breaking new ground in everything we do. I say that because we are THE national charity for the UK and the hepatitis C virus was discovered just over 20 years ago, which means we don’t have any example to follow.

Last year we celebrated our 10 year anniversary which gave us a chance to look back over the work we’ve achieved.  An indication of how far we’ve come was reflected in the quality of the applicants we’ve had for the job of Comms Manager.

The Hepatitis C Trust was started by a handful of hep C patients, including Charles Gore (still our Chief Executive), who were frustrated by a complete lack of information for people once they were diagnosed. They originally only had the resources to focus on information.

I first met the team at The Trust in 2004 when I was researching my film Louie, Me and Hepatitis C. There was a skeleton staff of Charles Gore, Sam  (who is still there) on the helpline, Catherine doing the website and organising health days and Jane who was one of the founder members and whose illness dictated that working full time proved too much.

I trained up to do the help line, which is the hardest job at The Trust.  Nothing prepared me for some of the stories you hear working the phones. I personally found it too close to the bone. I was doing treatment at the time and couldn’t separate the stories and my home life. Although it wasn’t for me our helpline is going strong and still run entirely by people who have got or have had hep C. It’s unique in that when you phone us you talk to someone that can properly empathize not just dish out advice from a leaflet.

My personal contribution to The Trust has been awareness. When I started we didn’t have

Me and Gizzi Erskine

one celebrity follower who we could call on to speak for us in the press. Celebrities are currency to charities. They are your passport to getting your cause talked about. We actually have an army of them now but I’m particularly attached to Sadie Frost and Boy George who both became patrons of The Trust and Gizzi Erskine who I’ve been working closely with for a couple years. Our celebrity ambassadors go the extra mile. They sit down with me, develop projects and discuss key issues. They certainly aren’t just lending their name to the cuase. They all own the projects they get involved in and have as much invested in them as we do.  Sadie Frost has been on a journey with us. Through her work with the Trust she’s been able to understand more about her father who sadly died of hepatitis C. Click here to see The Great British C Party video

Sadie and Boy George at our Get Tested! 80s icons press night

The Trust now focuses on 5 key areas; support, information, research, representation and the international work we do with The World Hepatitis Alliance (WHA). WHA is another organization founded by Charles Gore, which represents 200 patient groups across 60 countries. In 2010 Charles persuaded The World Health Organization (WHO) to make World Hepatitis Day an official WHO event. There are only 5 disease areas recognised officially so this was a great achievement.

The Trust has inevitably grown.  We don’t only employ people who have hepatitis C anymore.  The host of parliamentary advisors, project managers and researchers who have come to work with us have richly improved the Trust. We’ve always had substance and known where we want to go but all the professional staff have shown us how. It’s been interesting learning from them.  We are still led by people with hepatitis C, which is important. One of the reasons I develop great relationships with supporters, I’ve been told is ‘because I live my story’. Our ultimate aim is to do ourselves out of a job. We want to see a point in time when people no longer die of hepatitis C and then we can close up and retire.

It’s the time of year that I start thinking about Ibiza.

Manumission's Johnny Golden poses on one of our notes

I used to work with Manumission when I was an agent as they booked a lot of my DJs. When The Hepatitis C Trust started What Not To Share, Manumission’s Mike and Claire had the genius idea of making manumission money that they handed out in the club. Lots of people learnt about not sharing notes that summer. The message on the notes said ‘Sharing bank notes or straws to snort substances can transmit the hepatitis C virus. Share the wealth, not this bank note’.

Every year I do an event with the International Music Summit (IMS) at the end of May. IMS is like a European version of the Miami Winter Music Conference but not as sprawling and more intimate.

IMS started in 2008 and is in its 5 year now. I tried to get them to take on What Not To Share in their 1^st year but the messages were too explicit. What Not To Share was fine for attention grabbing headlines but as on ongoing campaign to illicit public support it didn’t work.  It mainly focused on drug taking which excludes the many people who have caught hepatitis C from blood transfusions and blood products.

In 2009 we came up with Get Tested! – a call to action and a more palatable message.  Get Tested! applies to everyone, whether you’ve taken drugs or not. You might have shared someone’s toothbrush or razor, had an unregulated tattoo or caught it through blood products.

Pete Doherty blood painting

IMS took on Get Tested! in their second year. Lisa Moorish came up with the idea to take out one of Pete Doherty’s blood paintings to auction. I loved the idea, as a charity concerned with a blood borne virus it seemed so tasteless. I called the health editor of The Sun and asked if she’d write something about it.  Unfortunately they wanted to focus on Pete’s drug taking which wasn’t the spirit in which the painting had been given. She was apologetic but said that’s what her editor would want. Pete has always been very generous towards The Hepatitis C Trust and to repay him with an intrusive article wasn’t on. The painting fetched £5K and I’m told it’s recently been valued at £40K.

Me and Ken at The Get Tested! bus doing hand signals

In the run up to our 1^st IMS we parked up a double-decker bus in Leicester Square to test members of the public and to launch GET TESTED! I’d recently been on a radio show and met Ken Livingstone. After the show he told me how he liked what we were doing and to call him if he could help. I love him. He’s a true socialist who only wants the best for London. Ken came down and got tested for hepatitis C in Leicester Square in front of a wall of photographers and news crew. Click here to see a film we made on the day.

Each year at IMS we’ve done something slightly different but we’ve always had an auction. Artwork goes down best and we’ve had some illustrious bidders. Javier Anadon from Cafe Mambo has spent a small fortune supporting our auctions. He told me his wife doesn’t know where to put all the pictures he buys.

Inkie doing his live painting

Urban in Ibiza have been another great support. In 2010 we took out one of their urban artists Inkie, who did a live painting that we then auctioned. Last year I met Paul (Dizzi) Saunders from Urban in a bar and he wanted to know why I hadn’t asked them for a painting that year. I’d already printed the catalogue and had given it to Emma B who has acted as our auctioneer the last two years. He offered to get up on stage and sell it himself. A disheveled and anxious Dizzi stumbled onto the stage to sell a painting that wasn’t there and that we didn’t have an image for. Within 30 seconds he’d got an outright bid of €2k from Jamie Hargreaves of Matalan.

We have an enormous amount of good will over in Ibiza and I’m very grateful to Ben Turner, Simeon Friend, Danny Whittle and Pete Tong from IMS for taking a punt on us. We’ll be at IMS’s Legends dinner this year on 23 May.

Jade Jagger and Jade Gandey drawing attention to our Get Tested badges at Space

My other big allies in Ibiza are Mark and Sarah Broadbent who run We Love at Space. For three consecutive years on one night a year they charge everyone on their guest list €5 in.  To date they have raised us over €10K and all this money has gone towards getting our testing vans up and running around the UK.  This year we are going to produce wristbands with a barcode that will take people straight to a website with information. Click here to see a film we made at Space in 2010

For those of you wondering why go to Ibiza when we are a UK charity? The answer is simple. Ibiza has a reputation for being a party island but it’s full of young open-minded people who have the power to change perceptions. 60% of the tourists in the summer are British. Part of the problem with hep C is the lack of awareness and the stigma. To make inroads it’s crucial to raise awareness amongst the young. Not only can they change attitudes and perceptions, they can learn preventative measures to stop the spread of hepatitis C.

I’ve got another surprise up my sleeve for this year in Ibiza but that’s for another blog.

I do most of my work in my pyjamas. My son says I should get a pyjama allowance like other people get a clothes allowance. I’m very pleased with my recent pyjama achievement.

About 3 months ago I was idling around on a Saturday morning looking for a film to watch and I came across the HBO film Cinema Vérité about the making of An American Family in 1971.  I’ve long been fascinated with cinema vérité or as the Americans called it Direct Cinema, since aged 18 when I watched D.A. Pennebaker’s, Don’t Look Back, chronicling Bob Dylan’s 1965  UK tour.

Direct Cinema lists Grey Gardens, Salesman, Gimme Shelter and Monterey Pop among it’s canon.  Cinema Vérité most notably gave us Chronique d’un été.  The difference between the two ideologies was that the Americans on no account would intervene but the Europeans thought that you could get to the truth quicker by setting up situations.

A young Lance Loud

I mention this as An American Family is now seen as the first ever reality TV but it was actually Direct Cinema to a mass audience. An American Family introduced The Louds to the US. They couldn’t possibly have known the impact they were going to have.  When they agreed to being in the show PBS, the channel producing the show wasn’t even screened in Santa Barbara, where they lived (by the time it aired it was). PBS was known as an educational channel and The Louds thought no one would see the show.  During filming the Louds got divorced and their son Lance came out. In 1973 when the show was aired, America was scandalized by the Louds, in particular Lance, who was openly gay and living at The Chelsea Hotel.

As the titles rolled, captions told what had happened to all the people in the film.  Lance had died of AIDS in 2001 and had asked the filmmakers, Alan and Susan Raymond, back to film his death.  I looked up the film to find that he’d actually died of hepatitis C and had been co-infected with HIV.  The resulting film is called Lance Loud: A Death in The American Family.

I’ve been working on a co-infection campaign. Boy George and I recently shot some pictures for it. Co-infection isn’t the most glamorous thing to campaign about. The audience is very targeted and putting a human face to it is hard.

The more I read about Lance the more I liked him. Lance and his crowd at The Chelsea hotel laid down a blue print that today’s club kids owe their existence to.

I contacted Alan and Susan Raymond and asked them if I could screen the film. I explained to them who I was, what I do and said I was in a position to throw a party with a screening to make Lance proud.

Alan Raymond got back to me and said yes! He also introduced me to Stuart Comer, curator of film at The Tate Modern who is fan of the series. Stuart agreed to screen the film at The Tate Modern and suggested that we screen it with episode 2 of An American Family to put Lance into context.

Andy Warhol and Lance Loud

Alan sent me the films and I cannot tell you what a treat episode 2 of An American Family is. Pat Loud, Lance’s mother comes to visit Lance at The Chelsea Hotel. She’s a dead ringer for Ali McGraw in Love Story.  Everyone in the Lou Reed song Walk on the Wild Side is walking in and out of shot. The celebrated Andy Warhol hangout Max’s is featured with Candy Darling on a swing doing a scene out of a Jackie Curtis play.

After I watched it I asked Alan, so was that Holly from the song? He said ‘Yeah, she was always trying to get in shot”.  This film’s legacy is tremendous. Although we are looking back at another era the themes are totally contemporary.  The scene of Lance walking through Central Park with his mother and trying to explain to her who he is and how he’s found himself is so incredibly touching to me, especially as she is trying so hard to understand in an age that still had one foot in the fifties.

Lance towards the end of his life

I can’t think of a better way to put a human face to co-infection.  Lance is interesting, creative, loves his family, art and music. He also doesn’t want to die of hepatitis C and wanted the film to act as a cautionary tale.

So it’s all happening. The flights are booked for Alan & Susan Raymond. They will be doing a Q&A at the screening on July 4 ( an auspicious American date ) which will co-incide with World Pride. Tickets aren’t on sale yet but they will be in the coming weeks.

I’m dedicating my blog today to Adam Green who died yesterday.I met Adam in 2005 when he was part time Patient Advocate at The Hepatitis C Trust.

I owe a lot to Adam. He introduced me to my then future sister-in-law,  who I worked with on The What Not to Share campaign in 2006. Adam and I had been given the task of getting the campaign T-shirts on the backs of famous people and he suggested we employ Charlotte MacMillan. Charlotte and I hit off immediately and the good energy we generated working together made it one of the most enjoyable projects I’ve been involved in.

The idea of What Not To Share was to raise awareness of various routes of transmission and to quash the complacency of the general public who thought hepatitis C could never touch them. We ran with images of rolled up £5, £20 & £50 notes.  The first big bit of press we had was when I organised 30 club nights all around the UK on the same night.  We had huge spreads in Time Out, DJ Mag, Mix Mag and lots of broadsheets. The Big Issue accused us of scare-mongering but the National Treatment Agency praised us for highlighting the dangers of sharing notes, which had been fast becoming a common route of transmission.

Lilly Allen by Charlotte MacMillan

Charlotte and I set about photographing people. An old friend of mine, Ziggy Gilsenen had set up Bestival with Rob Da Bank and she furnished us with back-stage passes & AAA laminates to get the project going.  We spent the weekend at Bestival and came back with photographs of Lily Allen in her dressing room right  after she came off stage, also Mark Ronson, Neil Tennant, Brian Eno, Howard Marx and other artists who were current at that time.

Adam, Charlotte and I spent a memorable day visiting Topper Headon from The Clash,  to photograph him. Topper was undergoing treatment for hepatitis C at the time. He was gnarly and quick to lose his temper.  Since that day Topper and I have become friends and he’s a regular contributor to my work . He cleared hepatitis C and is unrecognisable from the man I met that day as his answer-phone message confirms he is now ‘busy having fun’.

Adam was a talented guitar player and left The Hepatitis C Trust to concentrate on his own music in 2008. He was also a long-time member of Grace Jones’s band and she was touring at the time, which made his part time job with us untenable.

In 2010 we worked together on a gig at The Paradise in Kilburn.  We put on a night called Get Tested, Get Covered with Sean Rowley from Guilty Pleasures.  Cover songs were performed by singers such as, Boy George, Dot Allison, Asher D, Lisa Moorish, Alice Temple and even Sadie Frost and Pam Hogg did unforgettable sets. Adam got together the backing band for this. We had a couple of members of Grace Jones band, along with a keyboardist who’d just come back touring with Westlife.  Adam didn’t compromise on the band. When I wanted to do things cheaper he put his foot down. And he was right. To accommodate all those singers the band had to be really good and versatile. The night was fantastic and the performances rocked. I never would have been able to get it together without Adam.  (click here to see the vid we made of the night)

Adam always looked like he was recovering from a big night out.  Like many people who have hit life’s highs and lows repeatedly he understood the human condition and was very helpful when my son was briefly going off the rails when he became a teenager.  The last time I spoke to Adam I was telling him that I’d been gambling on the horses and that I was brilliant at it. Most people had rung their hands at me and warned me of the pit falls. Adam just said with measured conviction “yes, we are all mad’.

It goes without saying that Adam will be missed. The outpouring of grief on Facebook is a testament to how much he was loved. He leaves behind a beautiful wife, two young daughters and a world that’s all the better for him having left his mark on it.

I was infected with hepatitis C in 1988.  I was living in Spain and going out with a Scottish drug trafficker who ran hash from Morocco to Sardinia. I can’t recall a single conversation we ever had, I was mostly in a drug-induced fug.  I can’t really remember ever sharing a needle, apart from one time maybe, the 1^st time I ever injected. It was a Saturday and we’d forgotten to take money out of the bank, (there were no hole-in-the-walls then) we didn’t have enough gear to last the weekend if we smoked it, so it made economic sense to inject. I think I was given the option of sharing with the Scottish drug trafficker or a gypsy. It’s a hazy memory. What we didn’t know in the 80s was that you can catch hepatitis C from sharing a spoon or a filter without ever having shared a needle.  Why? Because, unlike HIV, the concentration of virus in a tiny drop of blood is vast, which is why you’ll catch hep C from sharing a note to snort drugs but you won’t catch HIV.

I went jaundice yellow within a matter of weeks and had a spell in hospital but as the hepatitis C virus was yet to be discovered, I was told I was fine after a while and sent on my way.

Returning to England I embraced acid house and all the accoutrements that accompanied that scene. Then throughout subsequent years, gaining a BA in Film and working in the music industry I certainly wasn’t lightweight in my consumption. I had no idea I had a ticking time bomb that was reacting to every chemical I put in my body. I was young, having fun and was doing what everyone else was doing.

So when the lifestyle came crashing down around me in 2001 I realised that without any chemicals in my body I felt like shit, and not hangover shit, it was an unbelievable fatigue that I couldn’t shift.

A trip to the GP and a hunch that my yellow spell might be connected with the way I was feeling confirmed that I had hep C.  I spent  a while contemplating my situation, made a film about it and endured a year of chemo hell to try (& fail) to get rid of it, which brings me to the present more or less.

I’ve been at The Hepatitis C Trust for 5 years now attempting to put hepatitis C on the map, recently I feel like I’m getting somewhere.  I work with some very cool people like Boy George, Alan McGee, Jodie Harsh and Sadie Frost, and I put together some excellent events. I’ll be writing  about what I do in this blog and how chronic illness doesn’t necessarily mean your life is over. I hope it reaches a few people and generates a bit of understanding about hepatitis C, which anyone who’s ever shared a line, a toothbrush or a razor could have.

By the way for those of you who don’t know what hepatitis C is, it’s a blood borne virus, which primarily attacks your liver. Chronic infection i.e. more than 6 months, results in an inflamed liver which gradually gets more and scarred until eventually it’s cirrhotic and liable to get cancerous leading to death if you don’t get a transplant. Living with hepatitis C throws up a multitude of complications as your liver performs around 500 functions in your body. With an impaired liver, life can be difficult. Think about your computer with a virus and translate that to your body.