In the
early 1980s
people
suffering from Haemophilia found that blood
products used to treat their condition were contaminated with viruses. Some had contracted
Hepatitis B by this route, now many heard
they also had HIV.
In April 2006, the Sunday Observer printed an article about the contaminated blood tragedy. This was the revival of a campaign begun over twenty years earlier. In the early 1980s people suffering from haemophilia found that blood products used to treat their condition were contaminated with viruses. Some had contracted hepatitis B by this route, now many heard they also had HIV. Today we know that all the haemophiliacs contracted hepatitis C as well.
The article caused a furore. To many people this was completely new and they were outraged. The Observer led renewed calls for a public inquiry into the tragedy and all round the country people began to campaign.
Haemophiliacs were able to communicate their feelings inside a closed Internet forum. One contributor was Andy Evans from Birmingham; himself infected with HIV when he was only four years old. He quickly realised that the forum was too exclusive and that other people from outside the haemophilia community needed to become involved. He decided to create a new website where the vast amount of press coverage appearing could be gathered in one place and be accessible to all. He called the site Taintedblood.
It soon became obvious that this site had huge potential. An online petition was included. At the time of writing this stands at 175 signatures, including some from MPs, MSPs and MEPs, as well as the general public. This part of the site includes a printable template for signatures from those who don’t have computer access. Soon other people became involved, including Gareth Lewis, a seasoned campaigner whose vast experience of hosting other groups is invaluable to TaintedBlood. Next, we needed a place where people could come together and have a voice. Historically we had all been isolated and so the formation of our blog was a vital step; it was a place where people could post their own stories and ideas and start to form a proper community.
The next step was to set up a P.O. Box and a Paypal account for donations. Then a bank account was needed, and two signatories - suddenly Gareth was Chairman and Andy was Secretary! Due to the stressful nature of the work, the committee has seen changes, but currently consists of nine people, all volunteers, all infected or affected. Everyone has used their personal skills, strengths and experiences to help move us forward in so many ways.
At this point TaintedBlood seemed to take on a life of its own. Weekly meetings were held at AB Plus, a Birmingham organisation founded to support all those infected and affected by HIV. AB Plus was invaluable in the early days in providing a room and facilities.
It was around this time that Haydn Lewis got actively involved. His friend, Andrew, swiftly followed him. Andrew proved to be brilliant at helping Andy deal with the press coverage part of the website. We will never know how he had time to do this, because unbeknown to anyone at first, he and Haydn were working on a timeline. When they told Andy he formed a web interface round it and the TaintedBlood timeline was born. Today it is an awesome database and archive; a research tool regularly updated and used by the press, doctors and lawyers. As a supplement to the timeline we have an evidence page which contains documentation proving our case.
Shortly after the group’s formation we were told that in order to maximise our chance of success we should formally represent the largest number of people possible. We began to include mandated members and to date we represent 229 people in this way.
Since then the group has gone from strength to strength. We have held a peaceful protest in Glasgow and Manchester to coincide with Bill Clinton’s visit to last year’s Labour Party conference. His questionable role in the AIDS scandal is well documented in Kelly Duda’s Film; ‘Factor 8: The Arkansas Prison Blood Scandal’. We attended the Raindance Festival in London to mark the premier of this film. We’ve met with the Elton John AIDS foundation and have their support. We printed T-shirts, we made ribbons.
Today, TaintedBlood is a well-known and respected campaign and support group. We have taken an active part in the independent public inquiry currently being held at Westminster, chaired by Lord Archer, which - although not the government led and funded inquiry we continue to campaign for - has been a platform for recording harrowing stories of what has happened. The group continues to evolve; our next project, which will go live shortly, is a ‘Memories’ section on the website.
Although the majority of our members are from the haemophilia community, Taintedblood is there for everyone infected and affected by contaminated blood and blood products. We represent the widows, the children, and the grandparents. Our aims can be found on our website: www.taintedblood.info +
By Mark Ward who is one of the Tainted Blood team
