PERSONAL STORIES

Cambridge Evening News Interview with Tony Farrugia 20th April 2016

https://youtu.be/zjGRyUpA5V8

Dad infected with HIV after NHS tainted blood scandal slams cruel Tory payments cuts for victims

http://www.mirror.co.uk/news/uk-news/dad-infected-hiv-after-nhs-7771445

A Personal Story – a Haemophiliac infected with HIV, Hepatitis B and C describes his own devastating experience

There would be around 1,243 stories such as this to tell but only 300 co-infected Haemophiliacs remain alive today. Each one would have been told of their terminal illness in the 1980s and given eighteen months to two years to live:

I am now Forty years old and I was infected with HIV at age 11. My parents were told at that time, but decided it was better I wasn’t told as I was considered too young to understand. How wrong were they!

I remember quite distinctly as an eleven year old boy getting ready to start secondary school in the September. I kept on seeing haemophilia related stories on the news and HIV being spoken about along side it. Every time the news was on I always watched and listened and by the time I was actually told about my infection I was thirteen.

I remember the day like it was yesterday. My parents had told me I had to go and see the Haemophilia consultant at the Birmingham Children’s Hospital with them both. This was quite strange as it was mid week and I always went to clinic on a Friday with just my mother.

After arriving at the hospital we went in and the Dr started talking and asked me if I had heard of HIV/AIDS and did I know what it was. I told him that I did and that I knew I had probably been infected with it. He was quite surprised to hear me say it, as was my parents.

He then went on to say that I could never have a girlfriend or have sex.
EVER! Which strangely made me realise immediately that I would never be having a son or daughter. This made me feel angry and I was only 13, but that’s what seemed to bother me the most. The dying part somehow went over my head.

The meeting ended with the Dr asking if I had any questions, and I just responded that I had nothing to say and just wanted to forget about it. I wasn’t offered or given any kind of counselling.

We left the hospital and nothing more was said for a while. It’s only now I realise that on that day I was given a death sentence at the age of 13. How did I cope, I don’t know I just did. It all seems crazy to me now.

From that day every time I had a routine checkup I would get interrogated by the same doctor about whether I had a girlfriend or not. He kept pointing out how important it was that I didn’t have one as if I infected them I could get into big trouble with the law and go to prison.

That kind of talk always scared me. When I did start having serious
relationships with girls or whenever I met anybody I really liked, I then started to worry about things getting physical. I was scared to death from that point and thought non stop about how I was going to tell them about my illness, and how she would take the news.

The 1980’s where the dark days when HIV was considered the gay plague which you could catch by simply touching somebody who was infected.

I don’t think anybody today could imagine what it was like to have to sit somebody down and tell them you was infected with a terminal illness, and that you could potentially infect them with it. I was just a teenage kid having to deal with this massive burden on a daily basis without any help or
advice.

Every time it came to tell, my life was in that persons hands. I knew of people who had been rejected through telling people about their HIV status which then became public knowledge. They’re life changed forever from that day. Being taunted on a daily basis, having AIDS scum written on front doors of houses and being violently beaten up. I never wanted that to happen to me. But I was always legally obliged to inform that person of my status and at the same time risk being outed into the public if that person decided to run for the hills. Every time was a huge gamble.

My school days were the best days and I managed to keep everything a secret as I have done all my life. Only a handful of people know my status to this day.

Since being told of my HIV status in 1987 I then learnt I was also infected with Hepatitis B and finally learnt of my Hepatitis C infection in 1995. By this time I had been infected with HIV for ten years. The Hepatitis C didn’t worry me at all after living with the bombshell that is HIV for so long without any effective treatment. That’s how mentally tough I had become.

Antiretrovirals for HIV came along in 1997. So you could say our small community has played the guinea pig yet again and helped shape the current successful treatment you see for HIV today. But we have never had any recognition for that.

Some of the drugs we used in the early days were extremely toxic and not at all affective to treat the virus. In fact it made our health worse and even killed some people.

I managed to stay alive though but many others didn’t. To day there is around 300 of us left that are registered with the Macfarlane Trust. And forty or so infected partners.

Those dark days in the 1980s were terrible to live through and very frightening. I don’t think anybody today could understand how bad things really were. It’s something that I will certainly never forget.