Terrence Higgins Trust is supporting those living with and affected by HIV as a result of the Contaminated Blood Scandal. During the 1970s and 1980s, blood products infected with HIV and hepatitis C were given to people living with haemophilia and other blood disorders. Thousands of lives were lost as a result and people continue to be impacted today.
In 2018, a public inquiry began into the Contaminated Blood Scandal. It is believed to have included the largest number of participants of any UK public inquiry to date.
Through our Last Chance for Justice series of blogs, we hope to amplify the experiences of a group of people who are less known but are very much part of UK HIV advocacy. In these blog posts, you may read language that is less used within the wider HIV community. In many ways, this illustrates how unique their experiences are and how important it is that they are represented.
This is Libby MacRae’s story
Elizabeth MacRae, ‘Libby’ or ‘Liz’ as she’s affectionately known, beams as she recalls moments with her father. They lived a 20-minute train journey from Liverpool city centre, with her mum and younger sister.
Her dad's name was Peter, and in the early 1990s he died of HIV related complications after receiving infected blood products. He was 47 years old and Libby was 12.
Libby now works in management at the Department of Zoology at the University of Cambridge. Previously, she was a research scientist. Her interest in science was influenced by her dad, long before she knew his HIV diagnosis. ‘There was an electronic store called Tandy in our local shopping centre, and whenever they had something electrical they couldn't fix, they would call my dad and get him to fix it ... He was quite technical in that way ... so I was probably always going to be interested in things like that.
‘He once worked as a technician at Edge Hill College ... It was in one of the science departments. And I remember that he brought home a little flask of liquid nitrogen and we [would] dip things in and throw things out in the garden and smash them ... Froze a rose in the liquid nitrogen, smash that and frozen banana and smash that on the pavement. And I was absolutely fascinated.’
Peter missed a significant amount of school because of his haemophilia. Treatment wasn’t available for the condition until he reached his late teens: ‘So all of the usual childhood falls and trips and riding bikes and things’ often meant he hurt himself quite badly and had a lot of time off school. ‘So he didn't go to school very much. And he had quite fixed joints by the time he got to teenage years, because of all the damage, so he always walked with a limp. He couldn't straighten one of his arms, and he couldn't straighten one of his legs.’
However, through a passion for science and drive to self-learn, Peter built up electronics expertise. He was so knowledgeable that the University of Liverpool called him to help repair their first electron microscope.
Now in her early 40s, Libby recalls the moment she found out why her father was dying. Libby had overheard her mum talking on the phone: ‘I was listening from upstairs. [Mum] said "I don't know how to tell her it's AIDS" ... The next day at school, I went and looked it all up in the library. And thought, "Right, I don't like any of that", so then I went to the local library the following weekend.’
Libby describes herself as a ‘precocious child’. Her quest for knowledge led her to the University of Liverpool library. As a young child, she learned about early treatment options, including AZT.
Peter died in November 1991. The following month, Libby and her younger sister were given a genetic test to see if they were haemophilia carriers and also tested for HIV. At 12 and 9 years old respectively they were told they were carriers. She recalls the doctor saying, ‘If you have a child, there is a very high possibility that you would have a boy that would have haemophilia or you'd have a girl, they'd be a carrier, and this illness would just carry on and carry on and carry on. And you should really consider not having children.’
‘Neither my sister nor I have children, so that's clearly landed.’
Dr Kate Khair is a former haemophilia clinical nurse and Director of Research at haemophilia charity Haemnet: ‘I'm very saddened that that's what [Libby] was told ... The treatment for haemophilia was already better by the mid-1980s.
‘Being a carrier means that each time you conceive a baby, you have a 50% chance of passing on your affected haemophilia gene to each baby.’
Today there are a range of medical options to prevent and manage this. Manageable treatment is given to babies with haemophilia. Moreover, IVF enables couples to conceive unaffected babies; there are further options during pregnancy. ‘We can now test babies before they're born. If parents decided that they didn't want to have an affected baby, they could choose to terminate that baby ... It's obviously a very difficult choice and a very horrible thing to have to go through.’
In Dr Khair’s experience, most women don't choose this because ‘they've seen that the treatment is so much better. They've seen little children running around playing football that don't look anything like their brother, their dad, their granddad did … [they are not] very disabled. They can see that that treatment is dramatically better … [People who] were told that they were carriers should still themselves be under a haemophilia centre ... there are counselling services for genetics if they choose to have a baby.’
Unfortunately, Libby only experienced the reality of this a couple of years ago, after attending the inquiry for the first time. There she met others who had also lost their parents. ‘It would have been really helpful to know they existed, you know, 20/30 years ago. We could have all grown up together.’
During the victims’ evidence sessions, an early part of the inquiry proceedings, many of the ‘children’ stayed in one house together. ‘There were quite a few girls there and some of them had been told [not to have children] and some of them had had kids. And that was quite an "ugh" [feeling]!’ Libby exhales remembering when she realised, ‘Okay, so I could have [had] children. Oh, so yeah, that was not nice.’
Libby found comfort in meeting others like her, but was shocked at the same time. ‘But knowing that there is not just one … [but] multiple women like me, who lost their dads who were also told not to have children.’ She believes she ‘might still have a chance [to have children] potentially, who knows? Not quite sure, but some are definitely too old now and maybe have started menopause, and that is not okay.’
Learning she could have had children had a broader impact on Libby's life. She was married at the time; her husband wasn't able to support her in the way she needed. During commutes, ‘we were driving, and every time he picked me up [after work], I was crying.’ Libby’s husband would ‘ignore that’ and make small talk instead. ‘Every day for two weeks? I thought, okay, I can't cope with this, I need him to talk to me, so we ended up breaking up.
‘The inquiry [process] has been good in some ways and then it's been very traumatic in other ways because if it hadn't happened, I don't think [the break-up] would have happened. I mean, there's other reasons why I'm glad it's come out the way it has. Because I'm now with somebody who's a much better match for me in that regard and I'm happier.’
Libby had begun talking to her mum about HIV and her dad a few years ago and the inquiry enabled them to build on that. During the first session of the inquiry, ‘[my mum] was sat next to me holding my hand, and we both cried our eyes out, so it was a bonding moment.’
At Boxing Day dinner, Libby, her partner, her mum and sister were ‘talking about HIV, the inquiry, haemophilia, quite openly. That's the first time I could ever remember that happening with all of us … "Nice" isn't quite the right word; "freeing" maybe.’
Bakita Kasadha is a writer, researcher and activist living with HIV.