On the day of her uncle’s funeral in 1995, Jane’s life changed forever.* That was when she found out her uncle Edward, a person with haemophilia, had been infected with human immunodeficiency virus (HIV) from the treatment he was taking for his condition.
Adding to the family’s pain, the stigma that surrounded HIV and the disease it causes, Aids – because of its association with homosexuality and drug addiction – meant they kept the cause of Edward’s death to themselves. At the same time, they knew that Jane’s father, Roy, also had haemophilia and had been receiving the same treatment as his brother.
A rare genetic condition means that throughout their lives, people with haemophilia – of whom there are around 6,000 in the UK – must seek medical care when they bleed because one of their key blood clotting proteins, factor VIII or IX, is either partly or completely missing. In the 1970s and 80s, a new treatment to give people with haemophilia their missing protein using concentrated blood plasma was seen as potentially life-changing. In fact, it dealt many of them a death sentence.
