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Last Updated: Tuesday, 2 December, 2003, 15:21 GMT
HIV haemophiliacs: 'Too easy to forget'
By Clare Babbidge
BBC News Online

Robert James has been living with the HIV virus for 19 years.

Robert James at the Taj Mahal in India
Robert James travelled to the Taj Mahal after his HIV diagnosis
He is among over 1,200 British haemophiliacs given HIV-infected blood products in the 1980s - some of the early and unexpected victims of the global Aids epidemic.

Fewer than 400 of them are still alive.

Robert, 37, was 18 months old when he was diagnosed with haemophilia. His parents had been unaware the genetic condition was in their family. "I'm a mutant," he jokes.

Throughout his childhood and teens he was injected three times a week with the blood product Factor 8 to make his blood clot properly.

The risk of HIV infection through donated blood was recognised in 1983, following the deaths of haemophiliacs in the US.

There have since been many calls for a public inquiry into how infected blood came to be used. All donated products in Britain have been tested since 1985 - but this came too late for Robert.

'Out of the blue'

At 18, he was studying for his A-levels, hoping to go to university and to "enjoy lots of drinking and meeting women".

Engraved boulder and Birchgrove Group members at Stratton Wood
An engraved boulder marks the lives of HIV-infected haemophiliacs
His HIV diagnosis came "out of the blue" following a routine check.

"Although I knew I'd probably been given American products at some point, for the previous two years I'd been given British ones. I just didn't think it would be me," he says.

"I think I was in shock. I ended up just going back home and throwing myself into revising for my A-levels. My way to avoid it was to study - I don't think I'd have passed applied maths otherwise," he said.

Robert went on to study psychology at Swansea University.

He found out about the Birchgrove Group, a patient support group, and was invited on a free weekend away where he met other haemophiliacs with HIV for the first time.

I think it is too easy to forget us. I just want people to know that a lot of us are still around
Robert James
"I could talk openly about everything to people who really understood," he said.

The group was set up around 16 years ago by a small number of haemophiliacs in Cardiff who had been infected with HIV. They named themselves after the pub where they first started meeting - The Birchgrove.

Robert explains how the original members found solace and support at a time when HIV was described by some as the "gay plague" and leaflets saying "don't die of ignorance" were sent to every UK household.

He is now the group's chairman.

Dark days

In 1997 one of the early members of the group, and a friend to many, died from Aids-related illnesses. This marked the end of an era for Birchgrove.

"It has made it so much harder to find a partner - it kind of puts people off when you say you're HIV-positive
Robert James
Robert says it also seemed to mark the start of some very dark days when he knew at least 10 people a year who died from Aids, around half of them haemophiliacs.

But in the last few years, hope has been given to many of the survivors with the provision of antiretroviral drugs. Robert was prescribed them in 1996.

"I'm really sure I would not be here without them," he says.

"One of my main regrets is all the friends I have seen die," he says.

"Another is that it has made it so much harder to find a partner - it kind of puts people off when you say you're HIV-positive."

But he adds that many of the men in the Birchgrove Group have gone on to get married and have children.

"The diagnosis has made me do all the things I wanted to do, just in case I got sick and died," he recalls.

Living memorial

Robert, who lives in Brighton, now works on several projects, such as helping collate the life stories of haemophiliacs with HIV for the British Library.

The Birchgrove Group continues to offer support. Its quarterly magazine is read by people around Britain, including the widows of some of those who have died.

The group recently funded the planting of a grove of 1,200 trees at Stratton Wood, Wiltshire, as a memorial to haemophiliacs infected by HIV.

Robert says this is a memorial to those who have died and a celebration of those still living. "It makes me happy that it is a living monument, and will still be there long after we are all gone.

"I think it is too easy to forget us. I just want people to know that a lot of us are still around".

Your comments:

I've been reading some of the stories these past few weeks and it's been a wake up call for me. I send out hugs and love to all those living with Aids for their courage in not giving up and their determination to help themselves and others in any way they can. Thanks for publishing your stories.
Sonia, UK

I can only praise the doctors and support of the Haemophilia Society who have helped look after the boys and young men who have faced early deaths
Charis Dunn-Chan, UK

My brother's young life was thrown off course after a contaminated Factor 8 supply was given to him when he was 17. I can only praise the doctors and support of the Haemophilia Society who have helped look after the boys and young men who have faced early deaths because of this tragedy of imported and unchecked blood products.

My brother died last year aged 35 and we miss him and his lost future. For those in the community who know nothing about HIV/Aids please remember these young men as we remember them as lost sons, brothers, fathers, uncles and friends. There should be no stigma to this illness, we should only be ashamed of those who shun and insult those with HIV in the family.
Charis Dunn-Chan, UK

Robert, though I am not HIV I have always supported the work of people like you. Back in the 80s I had a haemophiliac friend who died of the disease. Congratulations on your work, and on the work of the group. We need more people like you in this country to get the messages across. Thanks.
Frances Williams, UK

I, too, am a 30-ish haemophiliac with HIV. I was infected in the early 80s and began taking part in drug protocols over the past six years. I can relate to Robert's plight and would encourage him - and others like him - to think positively. I have been fortunate, through years of heavy exercise and fitness, to remain healthy.

I began taking drugs in response to a dip in my platelet count eight years ago. Unlike Robert, I don't feel they are responsible for my well-being. I take them only to keep my wife happy. Regardless, they have not hurt.

HIV is an insidious disease, but one that can be dealt with and lived with - for as long as one wants to fight to survive. Haemophiliacs grow up learning how to fight and be strong. This prepares us for many future battles.
John B Thompson, USA

Now I have to live with it. It's very scary and I feel like I should not continue hoping to find that special someone
Dustin, USA

I was reading your story, and it really relates to me, I also am haemophiliac. I was also given clotting factor for factor 8, and was infected with HIV. I'm now 24, and am still very healthy; I know what you're going through. I live it too, it's scary, and sometimes you feel alone. I tried to have a relationship last year. I had refused to ever date up until then, because I did not want to make the wrong decisions. Even in high school, I had to tell my girlfriends, to go find someone else, because I would not go to certain extremes.

However when I was 23, I found someone who I thought I could trust and believe, but they lied to me and left me. Now I have to live with it. It's very scary and I feel like I should not continue hoping to find that special someone. I feel your pain and anger.

I want to go to college to study medicine to become a scientist and help them find better medicine, so I can help other people. I'm really good at science and computers. But I live on disability and it doesn't go far. I hope to apply for grants so I can begin my study against Aids.
Dustin, USA

I am a widow of a haemophiliac who died of HIV related pneumonia four years ago at the age of 32. My husband, Andrew, was a bright, talented young man, loved by many people. He would have made a fantastic father but we were unable to have a family without the risk of him passing the infection to me and any child we might have.

Although Andrew managed not to become bitter about what had happened to him, he did say, just a week or so before he died, that he felt he had been cheated of his life. The fact that there was no public enquiry and that no one ever took any responsibility for what happened makes matters worse, as it seemed that no one cared about the ruined and lost lives. Andrew was my soul mate. I still miss him every day.

No amount of compensation could ever make up for this loss, but I should like to know the truth about why blood was taken from high risk groups. It's time there was a public enquiry.
Amanda, England

Robert, your courage is an example to us all
Dirk Venter, South Africa

Robert, your courage is an example to us all. Where many or most would have given up, your determination and love for life has shone through. Thanks for your honesty.
Dirk Venter, South Africa

A childhood friend sent this to me. I lost my brother (also a Factor 8 deficient) to this dreaded disease. Jim was born in 1950 when the life expectancy was only 25 years old and I saw him go through whole blood, plasma and finally the Factor 8 transfusions (which his wife did at home).

He remains my hero; he was just shy of his 45 birthday and left behind a young daughter and wife and thousands and thousands of dollars of medical bills.

No one seems to think about these guys when they're fund raising, it seems to me or some of the money raised would go to their families who are left with untold burdens.

My prayers are with all of you in the Birchgrove Group. Jim also participated in support groups and would have loved one named after a pub!
Linda Boyce, US

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