Alan Burgess was diagnosed as a child in 1967 with a moderate form of haemophilia. He was married with children in the 1980s when he was given NHS contaminated blood products and became infected with HIV. He was instrumental in setting up the Birchgrove Support Group, a campaigning group set up by haemophiliacs with HIV, and gave evidence to the Infected Blood Inquiry.

 

As a haemophiliac, I always had to be careful. If I so much as bumped against something, I might start bleeding internally into a joint, which would become painful and inflamed and, unless the bleed could be stopped, the joint suffered lifelong damage. I tried not to let haemophilia get in the way of anything I wanted to do, so I used to lead a fairly active life. In 1982, I got a knock playing football which led to me being treated with a contaminated batch of NHS Factor VIII at Addenbrooke’s Hospital in Cambridge.

 

Three years later, in 1985, my haematologist phoned me to say haemophiliacs in the UK were being routinely tested for what was then called HTLV-3, later to be called HIV, after some in the US had become infected – but there was nothing to worry about, as British blood products were thought to be safe. I was tested, thought no more of it, but a few weeks later a brown envelope turned up in the post. And that was how I found out I had tested positive for the AIDS virus – by letter. 

 

My wife and I made an appointment to see the haematologist in my local hospital. She was utterly useless, didn’t have a clue. She said: “You know, you might be lucky. Not everybody dies with it.” I thought: Die? How can I die at 28? We were so confused we made an appointment to see a haematologist at the hospital where I’d received Factor VIII,but she was even less help.She implied we were wasting her time, as we’d already seen the haematologist in Suffolk. She was so dismissive of our plight my wife started to cry and was upset but we didn’t get any advice about how to live with the virus. 

 

Within two months, my wife was pregnant with our third child, and it was only then we realised what we were facing. After having no joy in trying to find advice on whether to have the pregnancy terminated, our GP was our last port of call. He told us that, as far as he knew, both my wife and baby could be infected. Again, the advice he gave us was hardly practical. He told us to put our faith in God and pray everything would be all right. When Denise went into labour, she was put in a room on her own at the bottom of a long corridor in the maternity unit, with yellow biohazard stickers both on the door and in the room. We were both warned not to tell anyone of my status in the maternity ward as it would lead to patients discharging themselves along with the new-born babies, such was the fear of AIDS at the time. Fortunately, both she and the baby tested negative.

 

We were advised not to tell anyone. And lived our lives accordingly. One day I was painting the next-door neighbour’s house with one of the men who worked for me, and my wife was in our garden hanging out the washing. The radio was on, and a news item came on about Rock Hudson dying of AIDS. “Know what I’d do?” said my workmate. “Line ’em up against a wall and shoot the bloody lot of ’em. Dirty bastards” Denise heard him and shouted: “You have that attitude and you won’t be working for my husband!” though I was frantically trying to shut her up in case it made him suspicious.

 

At this stage I hadn’t been referred to an AIDS specialist. It was two years before I became ill. I kept getting serious chest infections but, being self- employed, I’d struggle back to work as soon as I could – there’s no sick pay when you work for yourself. Believe it or not, at that time I’d never even met another haemophiliac – there aren’t many out in the sticks in Suffolk. But I heard the Haemophilia Society was planning a class legal action, so I got in touch and went to a meeting in Newcastle. Suddenly I realised I wasn’t alone, and that the treatment I’d been getting was shockingly inadequate. Afterwards I stormed into my haematologist’s office and was finally referred to a chest specialist. 

 

It was six years before the NHS let slip that I’d also been infected with Hepatitis C, and that I’m at risk of CJD – Creutzfeldt-Jakob, mad cow disease – from NHS contaminated blood products. 

 

As haemophiliacs, we could see the gay community organising a social support network and how strong it was, so we started a support group called the Birchgrove.The people I met there were like brothers, the only ones who could really understand how I felt, and some of those friendships have lasted to this day. When the first treatments arrived,I was placed on AZT,but the side effects were horrendous, I’d never had headaches like it, I was nauseous, and had stomach problems along with acute diarrhoea which led to one of many hospital stays at the time. I dreaded putting those tablets in my mouth. By now my poor health had dictated that I’d had to give up work, because the doctor told me that if I didn’t, I’d be dead within six months. If I stopped work, she added, I possibly had two years left. Unfortunately AZT wasn’t the only AIDS drug I had to endure. Over the following years a toxic cocktail of drugs, again with horrendous side effects were given in an attempt to keep me alive. Some of the long- term effects of those drugs I am suffering now and will do for the rest of my life. 

 

In 1988,the government set up the McFarlane Trust to give us £20,000 each as a one-off payment. I suspect they saw it as a quick “… we started a support group called the Birchgrove.The people I met there were like brothers, the only ones who could really understand how I felt, and some of those friendships have lasted to this day.” solution to a short-term problem, because we’d all be dead within two or three years. But we saw it as an admission of guilt and pressed on with the class action. Under John Major’s government in 1991, we were told we were to get a larger payment as an out-of-court settlement, but were told by our solicitors that everyone had to agree to the amount or it would be withdrawn. Another condition was that we had to sign a waiver saying we promised no further legal action over blood-borne viruses. I’d just been told I only had two years to live, so I’d lost the will to fight and I signed. But evidence presented to the current Inquiry has shown that the government were aware and knew that all the haemophiliacs infected with HIV also had Hepatitis C thus morally blackmailing us into signing the waiver which to this day shows how corrupt and dishonest governments can be. 

 

We told the children when they were old enough to understand and,as a family, withdrew into ourselves. But people locally were beginning to get suspicious of what was wrong with me and put two and two together. Denise was grilled by other parents when she did the school run: “Why’s your Alan ill again?” Whispers went round; our car was vandalised.The children were having a bad time at school, with some other children being nasty. One of my daughters went without school dinners because she dreaded standing in the queue for free school dinners as she thought it was shameful, and other kids would mock her and the family for having free school dinners. We had problems later with her during her teenage years, when she self-harmed. I only recently understood it was because she was under such stress, believing I was going to die, and found my prolonged bouts of illness and hospital stays harrowing. Like a stone thrown into a pond, the ripples go out and the whole family suffers. 

 

We lived in a small close and some people had stopped talking to us.The house was vandalised while we were on holiday. With that, along with damage to the car, we felt we had no option but to move. However, because of my HIV, we couldn’t get life insurance or a normal mortgage, and were lucky eventually to get an interest-only one. But without life insurance, or mortgage protection. I had to build up savings to be able eventually to pay off the principal, and that got “Staying alive was gruelling, and I was angry this had been done to me.The trouble with anger is you take it out on those around you.” me into trouble with the Department of Work and Pensions who wanted to remove my benefits because I was over the savings threshold and over the years we had many demoralising visits from officials from DWP going through every aspect of our finances which stripped even more layers of dignity from both me and my wife. 

 

Mentally, I was falling apart. I felt unclean and that I shouldn’t go near my wife in case I infected her. Our sex life, which used to be brilliant, went right out of the window. My business had gone to the wall and we’d have lost the house if it hadn’t been for the money from the government. Staying alive was gruelling, and I was angry this had been done to me. The trouble with anger is you take it out on those around you. After a row at home, I’d get in the car and stay out all night. Friends from the Birchgrove Group were dying, and I attended many funerals. I felt so depressed that I began to think I should be dead too and planned to commit suicide,but was found in time and committed to a psychiatric hospital. Although I came out after a month feeling better, the depression hung over me and I wasn’t very nice to live with so Denise and I eventually split up, and I sofa-surfed at my sister’s and other places until an AIDS social worker helped me find a place of my own. Even that was a fight – the council wanted to put me in a bedsit, although I needed a spare room for my daughters who would come and care for me when I was ill, and for the nebuliser I needed to prevent my pneumocystis pneumonia (PCP) recurring. 

 

When I was finally alone in my new abode, I took stock of my life and realised I couldn’t carry on like I was. My AIDS social worker managed to get me counselling, although just to visit the counsellor it meant a round trip of 100 miles, such was the shortage of qualified AIDS counsellors. After three long years,I’m glad to say eventually Denise and I got back together, although to this day I still suffer from depression. In fact, my doctor said I probably had Post Traumatic Stress Syndrome. When he said that, my retort was “POST? There’s nothing POST about my stress; I will have the stress of what happened to me and AIDS until the day I die!” But I have learned to live with things, I now cope in a better way and I chose to be open about having HIV and I gave an interview to a Sunday newspaper and interviews to the TV. Just to prove stigma towards those of us with AIDS hasn’t gone away, the week before the newspaper article was published, the window cleaner came round and saw all my HIV medication laid out on the table as Denise was busy putting them into Dossett boxes. He asked who was ill, and Denise decided she might as well tell him about my condition, as it was going to be in the paper. That was the last time we saw that window cleaner, though he still does the neighbours’ windows! 

 

Did we ever get justice? Over the years we squeezed a bit more money out of the government, after they started yet another begging scheme for us, but we are still awaiting proper compensation, something we are hoping that the present Public Inquiry addresses when it eventually reports. But yet more of us will have died due to long-term co-morbidities, suffering from, amongst other things, coronary vascular disease, kidney disease, liver problems, cancer and joint problems – brought on, we believe, by being long-term AIDS survivors. As for justice, we’re still waiting for the Infected Blood Inquiry, which got underway in 2018, to establish the basis for some form of redress, but it will never bring back the 1,100 haemophiliacs that were cruelly robbed of their lives. Originally there were 1,243 haemophiliacs infected with HIV in the UK. Now there are fewer than 250 or so of us left. HIV casts a long shadow. 

 

I have no idea why I’m still alive, when so many just like me have died, as this awful disease seems to have no logical explanation as to who is taken and who is spared. One thing I am sure of though is that I couldn’t have survived if it wasn’t for the love and support of my wife Denise and daughters Sarah and Laura. For that I will be eternally grateful.