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25 Oct 19
Infected Blood Inquiry – London (October) Hearings – Week 2, Day 1

Elizabeth Hooper

Liz, the first witness of the day, spoke to the Inquiry of her loss of two husbands, both of whom received infected blood and contracted viruses. Liz’s first husband Jeremy suffered from severe haemophilia B. Liz and Jeremy were together from around the age of 16 and in 1993 they had a son. Liz recalled that around the year 1987 Jeremy had visited his doctor to ask about the risk of him contracting HIV. He was told that because the Factor XI products that were used on Jeremy were heat treated, it was not something he would have to worry about. Liz noted that at this time Jeremy was not told anything about hepatitis.

It was not until the mid 1990s that Jeremy and Liz were told at an appointment together that Jeremy had hepatitis C. Liz shared that they were told that Jeremy had likely had the virus for over 10 years. Jeremy was very angry they had not been told earlier, especially as the medical staff had known that Liz had given birth to their son in 1993. Liz described the treatment Jeremy had for hepatitis C as horrific and she explained that when he passed away, she had to be strong to make sure her family were OK financially. She stated that no counselling or support was offered to her during this time.

Liz met her second husband Paul in 2009, a sufferer of severe haemophilia A, who had been infected by HIV and hepatitis C by contaminated Factor VIII products before they met. She spoke about how Paul’s health deteriorated, notably so after 2015 when his blood pressure became astronomically high. She explained how a brain scan revealed he had had a stroke. After this his health continued to deteriorate until he too passed away as a result of the infections.

Liz struggled to cope with the fact that for the second time in less than a decade the contaminated blood scandal had left her bereaved. She further explained the financial difficulties she had, particularly after Paul’s death, struggling to once again sell her home and the difficulties she has had with the EIBSS. Liz noted both of her husbands were amazing men and need their storied to be told. She finished her testimony with a poem she had written for Jeremy and Paul.

Theresa Smith

Theresa shared with the Inquiry how being infected with hepatitis C through a blood transfusion during an emergency appendectomy has impacted upon her life. The transfusion happened in December 1983 and around a year later she was diagnosed with non-A non-B hepatitis after she had become jaundiced whenever she was unwell. At this point Theresa explained that she was not given any information on how to manage the condition or told of any precautions she should be taking.

Theresa spoke about giving birth to her son Tom in 1989 who at birth was found to have the rare condition sacral agenesis. It is a severe disability which has resulted in Tom having multiple surgeries throughout his childhood. Although Tom went to university and has tried to work, he has been unable to continue doing so because of chronic pain. Theresa believed that the sacral agenesis was caused by her Hepatitis C as she did not have any of the risk factors ordinarily associated with the condition. Research Theresa has done on hepatitis C since has added to her belief that it is what caused Tom’s condition.

Theresa spoke of how she sought out treatment around 2002 when she learnt that non-A, non-B hepatitis was hepatitis C. The doctor she was referred to explained the virus to her for the first time and offered her a chance to be involved in a trial for treatment. He also advised her that Tom should be tested as the virus may have been passed onto him; this was later confirmed. Theresa shared that both her and her son were able to clear the virus through treatment, however, she described the side effects of the treatment as vile.

Theresa shared that there has been a huge emotional impact on her, especially with Tom’s sacral agenesis, as she believed it would not have happened if she had not had hepatitis C. She also spoke of her fear of the future as she feels like a living experiment.Theresa emphasised that her real concern is for her son and his future.

Mr AM

Mr AM spoke to the Inquiry about the treatment he has received for severe haemophilia A and the effect contaminated blood products have had on him. Mr AM shared that he was diagnosed with HIV in 1985 at the age of four and that his parents were told at the time he would be lucky to make his 10th birthday. His parents tried to make sure that he was happy and would go on good family holidays but in reality, the diagnosis had a devastating effect on his parents. Mr AM learnt of this diagnosis when he was 12, he said that although he felt very supported by the medical professionals and his family when he was told, it was a huge shock to him.

Mr AM said that he knows he later learnt he had been infected with hepatitis C, but he did not place a significance on this when comparing it to the HIV. He shared that he had a similar response when he was written to in 2004 and told he may have been exposed to vCJD, it seemed insignificant in comparison to his other problems.

Mr AM told the Inquiry of the various treatments he has had for his HIV and hepatitis C. He said that the hepatitis C medication in particular was horrific with debilitating side effects. Although he has now cleared the virus, he continues to suffer with brain fog and memory issues. Mr AM highlighted in his testimony how he believes that compared to others he was lucky with his treatment, primarily at Great Ormand Street Hospital. He suggested that he was an example of what could have been achieved if the treatment and help he had received had been available across the country, if there had been more specialised clinic developed with experts.

Mr AM ended his statement laying out the steps he believes the government should take moving forward and he questioned the lack of response and support there has been from MPs and the Royal family. Mr AM also took the time to thank his family and the medical professionals who have helped him over the years.

Robert Hodgkins

The last witness of the day was Robert who was diagnosed with severe haemophilia A when he was a few months old. Robert told the Inquiry that he was treated with Cryoprecipitate until 1973 when his treatment was changed to Factor VIII. To his knowledge, his parents were not given any information about risks involved with Factor VIII. In late 1974 Robert’s family were told he had hepatitis, there was a diagnosis of Hepatitis B and Robert recalls his parents were also told about non-A non-B hepatitis although it was not until around 1995 that Robert believes he was told that the non-A non-B hepatitis was Hepatitis C.

Robert shared that he has since cleared the Hepatitis C naturally. However, in 2012 results revealed that Robert had Hepatitis D, which was described to Robert as a very rare type and a form of parasitic virus that needed Hepatitis B to survive. He was also told that there was not treatment available for the virus and it is a progressive condition. Robert further told the inquiry of his diagnosis of being HIV positive in 1985 when he was around the age of 16. Years later Robert also learnt he had been exposed to vCJD.

Robert explained the effect that the various treatments for HIV have had on him. He shared that he had various experimental treatments that that he described as toxic. The treatments have given him various problems, leaving him to struggle with severe fatigue and depression. Robert also explained the psychological effect that having HIV, especially as a teenager, had on him. He said that more than anything it caused him to panic, thinking he did not have much time left. Robert said it socially proved to be a challenge too and he found it difficult to form long term relationships.

Robert spoke of the financial difficulties he has suffered. Due to the stigma and challenges of his health, paid work has been very limited, although he has been able to do a lot of charity work. He talked about his experience with the MacFarlane Trust, sharing that the impression he had was that he couldn’t get anything out of them. He also explained how the Skipton Fund has deemed him ineligible for payment as he had cleared hepatitis C naturally, had a PCR negative test for Hepatitis B and they did not recognise Hepatitis D. Robert confessed that his main concern for the future is the Hepatitis D because of the unknown element of it and lack of treatment currently available.

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