Paul

Paul, who has severe haemophilia A spoke to the Inquiry about how as a child he had negative reactions when treated with cryoprecipitate, so it was only given for essential needs and he would mainly be treated with bed rest, icepacks and bandages. From articles and advice from doctors, Paul’s parents were led to believe Factor VIII concentrate treatment would be the best chance for Paul to live a normal life.

Communications were shown to the Inquiry between doctors that showed how they had planned to treat Paul as far as possible with NHS concentrate. However, by the end by the end of 1976 he was on American commercial products. Paul said he used to think this was for financial reasons. However, in hindsight he thinks that the doctors were aware of potential risks of Factor VIII.

Paul shared that he first became infected with hepatitis B as a child from Factor VIII products.  When Paul was 21 and found out he was HIV positive, he thought once again that he was one of the very few unlucky ones. It wasn’t until years later he realised how prevalent HIV infection was amongst the haemophilia community. Paul also later learnt he had been infected with hepatitis C. Paul explained the stigma associated with his HIV positive diagnosis and how the best advice his Doctor ever gave him was to not tell anyone. Paul shared how he relied heavily upon various support groups for HIV and hepatitis.

Paul pointed out a constant need to question pharmaceutical companies and question what measures the Department of Health and the Government are taking to ensure safety of products. Paul asked, how do we know things have changed? Paul emphasised that he does not regard pharmaceutical companies as the enemy as his hepatitis c and HIV have been treated by drugs from such companies; but the way they have been seen to conduct their business is wrong.

Mr AH

Mr AH shared with the Inquiry that he was diagnosed as a baby with severe haemophilia A and from the age of one he was treated with Factor VIII in the late 1970s. He told the Inquiry how in 1984 his parents were told that he was HIV positive and that they should enjoy his life as much as they could. Mr AH explained that his parents did not want to tell him about his HIV status, but when he was around the age of 12 a play specialist told him he was HIV positive. Mr AH said that finding out this way was shocking and disturbing. Mr AH was also later diagnosed with hepatitis C.

Mr AH shared with the Inquiry how distressing his teen years were, especially when his HIV progressed to AIDS. He explained how he became extremely depressed and introverted.

Although Mr AH was able to successfully treat his hepatitis C in 2007 and controlled his HIV with medication, he explained that the viruses are all encompassing and continued to plague upon his health. This was demonstrated when Mr AH had to have a kidney transplant in 2016 due to chronic kidney disease which he had been told was an effect of hepatitis C. He further had to have open heart surgery due to arterial disease which had been attributed to some of his HIV medication.

Mr AH shared that he has to constantly fight to live a normal life because of the infections he was given by contaminated blood products. He explained the difficulties he has faced financially with his wife having to put her career on hold because of his medical needs. Mr AH finished his testimony by sharing that he is lucky to have a supportive family, although they have all struggled as a result of the contaminated blood, and that he is scared for the future and the future of his wife and child if something were to happen to him.

Mr AI

Mr AI, the final witness of the day, shared with Inquiry his experience of being infected with HIV, hepatitis B and hepatitis C as a result of contaminated Factor VIII. His cousin, who was the same age as him, had been infected with HIV in 1984. At this time, Mr AI’s concerned parents were told he would not be at risk of being infected as he had tested negative for the virus and as now products were heat-treated it would no longer be possible to be infected. However, by 1986 these products had caused Mr AI to be infected with hepatitis B (which he naturally cleared) and HIV. Mr AI was later also diagnosed with hepatitis C and cleared this infection naturally in his late teens.

Mr AI’s parents did not share with him that he was HIV positive until the early 1990’s when Mr AI was in his mid-teens. Before this time, his HIV positive cousin had died at the age of 12. Mr AI did not learn that his cousin’s death was related to AIDS until he learnt about his own HIV status.

Mr AI described to the Inquiry the difficulties he has faced over the years as a result of the infections he received though contaminated blood products. He shared that he has become immune to various HIV medications and described how the drugs he has to take cause him to deal with extreme levels of nausea. Mr AI further told the Inquiry of his 2005 diagnosis of B cell Lymphoma cancer in the chest, which he has learnt to be connected to the Hepatitis C. Mr AI shared how these infections have impacted upon his ability to have a normal life, choosing not to have children with his wife and very rarely going out or socialising with people.

Mr AI told the Inquiry that he had great support from his social worker who helped him learn how to function as a regular adult and informed his family on how to apply for grants from the MacFarlane Trust. Mr AI voiced his concern over the fact that now there is no longer a social worker fulfilling this role. Mr AI explained the various difficulties he has experienced with receiving financial compensation and help that he has needed over the years. Mr AI contrasted the differences in compensation available in Scotland compared to England, as well as describing the difficulty he has had in attempting to receive various grants. Mr AI concluded his testimony highlighting he believes compensation should be paid out to the families of victims who have died; the payments should not end when the victim dies.