Mr M has severe haemophilia A and was treated with cryoprecipitate and then Factor VIII for a few years. In the early 1970’s Mr M began home treatment which he thought was making his and his brother’s lives ‘better, not shorter.’ A television program was shown to him which highlighted what he called the three Hs; Homosexuals, Haemophilia and HIV. After this Mr M began having tests and was confirmed HIV positive in 1985.
Mr M was frustrated at the misguided information given to haemophiliacs about what the infection meant for them. Whilst the HIV infection was at the time a more significant problem, Mr M was also later diagnosed with hepatitis C. Mr M assumed that he was very infectious and was even afraid of his own tears.
He believes that there is still a significant amount of stigma towards HIV today. When he was first diagnosed, Mr M had no choice but to keep his HIV a secret in the face of increased public awareness and having to run a public facing business. He said that his and his brother’s lives were ‘emotionally and economically devastated’. Mr M has had significant problems obtaining dental care. He also experienced difficulty accessing financial assistance and described his applications to the McFarlane Trust as ‘jumping through hoops’.
Margaret spoke about her son Daniel, her mother and her cousin Ronald, all of whom suffered from haemophilia and were treated with infected blood. After initially being treated with cryoprecipitate Daniel was given Factor VIII. Daniel then started to suffer from colds, tiredness and weight loss. After Margaret found spots on Daniel’s stomach the GP diagnosed him with chickenpox. Margaret believed that the GP knew that what Daniel had was more serious. Daniel was diagnosed with HIV in 1985. She remembered screaming that she had ‘killed’ her son as she had been the one injecting him.
The family suffered horrendous treatment in the years following Daniel’s diagnosis. She had her tires
slashed, her car and house windows smashed, and the words ‘AIDS’ daubed on her front door. Margaret was forced to collect money from a shop floor as the shopkeeper didn’t want to touch her. Daniel suffered greatly in the last few years of his life and died in 1992 aged just 20.
Margaret’s cousin Ronald died in 1994 and it was only discovered that both had been infected with hepatitis C after their deaths. Margaret’s mother was also infected with hepatitis C through contaminated blood and spent the last few years of her life in a nursing home deteriorating rapidly. She died of cirrhosis of the liver in 2005. Margaret described the infected blood scandal as ‘mass murder’.
Laura Megan Ryan (known as Megan) was infected with hepatitis C through a transfusion after the
birth of her son Robert in 1981. After the transfusion she became tired and turned yellow. Megan was told that she had hepatitis B and was frightened when it was suggested that her baby should be taken away from her. Megan cleared the virus but her son Robert tested hepatitis B positive at the age of 18.
Robert said that when he was first diagnosed, he went off the rails and would drink heavily. He was told by a consultant that if he carried on he would be dead by 40, leading him to reduce his alcohol consumption.
One of the most significant consequences of Robert’s hepatitis B diagnosis was that his application to the Royal Air Force was declined. Robert said this was a ‘huge disappointment’ as all of his family had been in the forces. He also suffered mentally with the knowledge of his shortened life span and the long-term damage that’s been done to his liver. Robert may need a liver transplant in the future.
Megan had to give up and her job and move closer to Robert. This has left her in a financially unstable situation. Megan said that hepatitis B needed to receive the same recognition as hepatitis C.