Beverley Tumelty, who will give evidence as part of a public inquiry into the blood scandal, says she feels it is her duty to stand up for her older brothers
The sister of two haemophiliac men who were infected with HIV through contaminated blood products says she is determined to get justice for them.
Gareth and Haydn Lewis were both diagnosed with the disease in the 1980s after undergoing blood transfusions from donors in the United States.
The pair, who were brought up in the Llanrumney area of Cardiff, were also found to have hepatitis C years later, and died within six months of one another in 2010.
Their sister Beverley Tumelty, 54, will give evidence as part of a public inquiry into the blood scandal today.
She said: ‘It fills me with dread knowing that I have to be part of this inquiry but my older brothers always looked after me growing up so I feel it’s my duty to speak about what happened to them.
‘While they were alive they campaigned so doggedly to help others in the same position as them. I am phenomenally proud of them.’
She added: ‘My earliest memories are of them being in hospital or wearing some sort of plaster cast.’
Gareth and Haydn were born with the genetic disorder haemophilia, which hampers the body’s ability to make blood clots.
During the 1970s and 1980s haemophiliacs were given blood plasma which was the standard form of treatment for the condition. But some of it came from unregulated commercial companies in the US which paid needle-sharing drug users, prostitutes, and prisoners for donated blood.
Ms Tumelty said Gareth (pictured) and Haydn, both brought up in the Llanrumney area of Cardiff, dealt with their illnesses very differently
When these products were made into the easily-transportable factor VIII and factor IX – which helped the blood to clot – and given to patients, many became infected with blood-borne diseases carried by the original donors.
Mrs Tumelty believes her two brothers were infected with HIV and hepatitis C during transfusions in around 1984.
‘For them, and for us as a family, it was an incredibly scary time,’ she added.
‘HIV at the time was considered a terminal diagnosis as many people developed Aids and were dead within a few years.
‘The treatment for HIV was brutal and that also contributed to people being severely unwell. It was also seen very much as a ”gay disease” which had a great deal of stigma around it. People like my brothers were blamed for their diagnosis as it was seen as only sexually transmitted.
‘Understandably it led to the breakdown of marriages and relationships as a result.’
She said she thought she would lose both of her brothers in the 1980s but after trying different combinations of drugs they both pulled through.
‘Haydn had young children at the time so it was a massive worry for him and his wife Gaynor,’ added Mrs Tumelty, from Llanishen, Cardiff.
‘They also decided not to have any other children because of the infection.
‘It was just horrendous watching my brothers go through this and know there was nothing I could do about it.’
Mrs Tumelty said Gareth and Haydn, both brought up in the Llanrumney area of Cardiff, dealt with their illnesses very differently.
‘Haydn was all about finding answers and seeking truth by uncovering documents and submitting Freedom of Information requests.
‘Gareth went into himself and removed himself from the family for a while but on the whole he was the more fiery of the two.’
Haemophiliac Haydn Lewis (pictured) was infected with HIV and hepatitis C after being given contaminated blood products. He died in May 2010
But the pair of them, who were then diagnosed with hepatitis C in the 1990s, formed a support group for fellow contaminated blood victims in Birchgrove, Cardiff.
‘In the early days it was just about having a drink together and just chatting about things,’ Mrs Tumelty said.
‘But it soon grew when they managed to secure funding from the Charity Commission and before long the Tainted Blood group was created.’
However before long Haydn was found to have cirrhosis of the liver – a typical side-effect of hepatitis C – and later developed liver cancer.
He underwent a liver transplant which prolonged his life for another 12 months, but he died on May 21, 2010 at the age of 53.
While Haydn’s decline into severe ill health was more gradual, Gareth’s was quite the opposite.
‘We were away in Spain visiting our other brother Mark when Gareth collapsed of a massive brain haemorrhage,’ said Mrs Tumelty, who confirmed that Gareth died on December 13, 2010 at the age of 52.
‘We’ve since found out that some people with hepatitis C have gone on to suffer this fate.’
The families and victims of the blood scandal – described as the ‘worst treatment disaster in the history of the NHS’ – have never received any formal compensation.
Across the UK more than 1,000 people have died to date while hundreds are still living with the debilitating illnesses and health issues associated with being infected.
Mrs Tumelty said: ‘No fault has ever been attributed to either the NHS or the blood donation system in the USA.’
She added that she was greatly encouraged by this new inquiry which is examining why men, women and children were given the infected blood products and exploring whether there was a cover-up by the NHS.
‘It seems to be a more professional national setup compared with other inquiries that have gone before them.’
The final day of the four-day Welsh leg of the inquiry will conclude today.