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24 Oct 19
Infected Blood Inquiry – London (October) Hearings – Week 1, Day 4

Susan Delglyn and Tara Allen

The first witnesses of the day were Sue and Tara. They spoke to the Inquiry about Mick, Sue’s late husband and Tara’s late father. Sue explained that she met Mick in 1971 and that from her knowledge Mick was treated with plasma and cryoprecipitate for his severe haemophilia A until the 1970s when he was treated with Factor VIII. Sue shared that the medical records she has been able to acquire of Mick’s seem incomplete but they do show he had the hepatitis B antibody in 1975, something that she was never told about.

Mick’s medical records suggest that Mick was known to be HIV positive in 1985, although Mick was not personally told of this diagnosis until a year later. The medical records also show reference to chronic liver disease in the 1980’s with notes from doctors suggesting Mick had an alcohol problem. There were also references to hepatitis C in Mick’s records over the years but Mick was not told he had Hepatitis C until 6-8 months before he died in 1993. Sue and Tara both emphasised that Mick rarely drank alcohol and that the suggestion he did so on his medical records were false accusations when really his liver disease was caused by hepatitis C from contaminated blood products.

Sue told the Inquiry that she and Mick initially agreed to keep Mick’s diagnosis of HIV a secret from their two children, although Mick did wish to tell them. Tara and Sue both spoke about how Mick’s infections had a huge impact on their family life. Sue told the Inquiry it was detrimental to her relationship with Mick, especially after Mick had a brain haemorrhage in 1991 which caused his personality to change. Sue also talked about the financial impact of Mick’s ill health forcing them to close their family business.

Sue and Tara shared that Mick’s death in 1993 was at a result of the hepatitis C. Sue said that over the years Mick was never offered treatment for the hepatitis C and Tara shared her concern that the false entries in medical records about alcoholism were why he was not offered treatment or a liver transplant. Tara ended her testimony stating that the contaminated Factor VIII products should never have been licenced until they were found to be safe and that the Government and pharmaceutical companies should admit liability. Sue added that their loss of a father and husband was unjust and a complete betrayal of the faith Mick had in the doctors who were meant to care for him.

Janice Whitehorn-Cox

Jan spoke to the Inquiry about her experience of being infected with hepatitis C as a result of contaminated blood products. Jan explained how hepatitis C was passed onto her by her mother who had been infected from a blood transfusion when she had a kidney transplant in 1972. Jan shared that her mother was told of her diagnosis publicly in a waiting room. Furthermore, her mother’s hepatitis C was not treated until 2016 and it only happened after they involved an MP as she was apparently not eligible for treatment as her cirrhosis was not on the right scale.

Jan was 22 when her mother told her she had hepatitis C and that Jan should also be tested. Jan shared that she went to a sexual health clinic where she believed she was being tested for ‘everything’ including hepatitis C. Her results came back as clear and it was not until years later that she found out hepatitis C was not one of the infections she had been tested for at this time.

Jan shared with Inquiry the problems she has had with doctors over the years. She went to the GP 13 times between 2005-2009 with symptoms of joint pain and tiredness but was constantly told that losing weight would solve her problems. On one occasion she went with her who asked about the possibility of hepatitis C because of her own condition but the GP was very dismissive. Jan told the Inquiry she was not diagnosed with hepatitis C until she was 36 and went for fertility treatment. She was told over the phone by her GP that she had hepatitis C.

Jan spoke to the Inquiry about her treatment and how by the time she cleared the virus at age 39 the damage to her health was irreparable.

Mrs AJ

Mrs AJ spoke to the Inquiry about her late husband who passed away in 1998. Mr AJ had already been infected with both HIV and hepatitis C when they met, although he only knew about the HIV. Mrs AJ shared with the Inquiry that her husband’s haemophilia was unusual as although it was severe, he did not bleed and therefore up until his admission to hospital in 1984 he had only been treated in on three occasions in 1968, 1970 and 1971, after this time he was not treated with Factor VIII until 1984.

Mrs AJ shared that her husband was diagnosed as HIV positive the following year in 1985 and although there were references to hepatitis C on the medical records, he was not told about this until 1995. He was also later diagnosed with B cell Lymphoma. Mrs AJ spoke about how this impacted upon their family life. She shared that Mr  was a great stepfather to her child. Mrs AJ shared that her husband’s death as a result of contaminated blood products meant he lost his chance to father children, to have financial to security and to have any kind of security.

Mr AK

The final witness of the day was Mr AK who was diagnosed with severe haemophilia A as a child. When he was young, he was treated with cryoprecipitate which worked well for him but he was later moved onto Factor VIII. Mr AK stated that he was never given any choice over the treatment used and not advised about risk of infection. Mr AK shared that in his early 20s at a routine clinic appointment he was asked if he wanted to know his status. This is when he found out he was HIV positive. Years later in 1990 Mr AK learnt from a letter that he also had hepatitis C.

Mr AK explained how the treatment he had received for HIV and hepatitis has affected him and the terrible side effects he experienced. He feels that he and others have been used as guinea pigs for various treatments of new drugs. He further described the difficulties he has had in being eligible for treatment for hepatitis C.

With his last treatment, Mr AK cleared the hepatitis C virus. He also said that he has experienced a knock-on effect with dental treatment as he has to tell dentists he is HIV positive and has hepatitis C which has caused problems over the years.

Mr AK shared the impact of being infected with HIV and hepatitis C on his ability to live a normal life. He explained that he has been to HIV and hepatitis C support groups from which he has received more information that from medical professionals. He also shared how he had children naturally with his ex-wife but made the decision to keep his HIV status a secret from a lot of close friends and family, including his parents as he did not want them to blame themselves. He also explained the financial impact this has had on his life and how he has been forced to rely on benefits and financial assistance.

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