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tv   Infected Blood  BBC News  May 18, 2024 10:30pm-11:01pm BST

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but i'm here on my own because... ..he didn't make it. i'mjim reed. for almost a decade, i've been reporting for the bbc on the infected blood scandal. the full story of what happened is only now coming to light. over the last a0 years, it continued to be covered up, not dealt with. for nearly six years, a public inquiry has been investigating how so many were infected. an injustice has been done and we need to sort it out. was it mistakes? was it purposeful? was it just incompetence? that constant gutting feeling of sadness — why did it have to happen? something that should have saved their life..| ..killed them. and still, 40 years later, . there's no answers to that. i'm pete.
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i'm a haemophiliac. if i twist an ankle or cut myself, the bleeding, in my case, itjust carries on, basically. very little clotting, so i'd need to get treatment. when i was eight years old, i was infected with hiv through my medical treatments. i'm one of the few survivors of the hiv scandal. it's not something that you should go through as a child. i can't really imagine what my life would be like if i hadn't been infected. stuart wasjust bubbly all the time, you know? he was a fun—loving child. he just loved life.
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great sense of humour. notjust my son, but also a best pal. just cuddly. loved to cuddle and loved his mum and dad. and he loved his sister. stuart was my older brother. he was 18 months older than me, and i'd like to think— we were very close siblings. big memories for me i was stuart at christmas. he would come into my bedroom, three in the morning. _ "he's been, he's been! i'd follow him through the hallway to mum's room and she'd - say, "no, too early! back to bed. we went in for an appointment. we were taken into a consulting room and stuart was, i believe, in the play area. um, we'd left him outside and we went into this room and we were informed that he was hiv positive. we were devastated. we were absolutely devastated.
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i mean, you know, to be told something like that is just mind—blowing. stuart and pete were regularly in and out of hospital. in a few parts of the country, patients can use this stuff, cryoprecipitate, but it's bulky... early treatment for haemophilia often involved a stay in hospital to receive a blood plasma product called cryoprecipitate. then, in the 19705, a whole new treatment came along — factor viii concentrate. archive: this injection will stop bleeding. - his blood will never clot naturally because one vital ingredient is missing. it's called factor viii. it was fast, it was easy. and, for the first time, haemophiliacs could be treated at home. it made their life so much easier. archive: vital hours _ and minutes are saved with this kind of home treatment. it's easily stored at home in the family fridge, and it's simple to take. there's no doubt in the medical profession that this
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form of home treatment is the best for haemophiliacs. factor viii concentrate was seen as something of a wonder drug. the nhs at the time really struggled to keep up with demand, so instead, large amounts of it were being imported from abroad, mainly from america. but there was a problem. factor viii concentrate was made by extracting the blood—clotting protein from mixed—blood donations. that brought with it a risk. if one donation carried a virus, like hepatitis, it could contaminate the whole batch. that risk was increased with product from america. archive: half the factor viii used in britain comes - from the united states. unlike in the uk, where blood donation has always been voluntary, in the us, people were being paid to donate blood, and that meant that high—risk groups, including prison inmates and drug addicts, had a clear incentive notjust to donate, but to potentially lie about any
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infections they may be carrying. we now know those infections included hepatitis c and hiv. i'd gone into the hospital for an appointment, and theyjust went to the fridge and got some american product, and that was the first and pretty much only american product that i had been given. we weren't really aware of any difference between the factor viii that we were given, so we weren't actually aware of it being nhs and then changing to american factor viii. pete says he was given american factor viii in february 1985. stuart received it injuly 1983. both boys later tested positive for hiv. stuart was just six years old.
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it was absolutely awful. this beautiful little boy that we'd tried so hard for... excuse me. ..to... ..to come along in the first place. and he was beautiful. absolutely stunning. beautiful little boy. to know that he'd got a death sentence hanging over him. so, the whole family, we lived our life knowing that he was going to die at some stage in the future. and, obviously, he did. robbed is a good word. yeah, 100%. when he died, part of me died, because when you lose your sibling, and my only sibling, you lose your validation of your previous life.
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you've got no—one now to go, "oh, do you remember when you did this? "do you remember when you did that?" i can't do that with anyone. so part of my life left when he left. i have always blamed myself for taking him to have his treatment, which infected him. it doesn't matter whether people could say to you, "you're not guilty of that, that wasn't your fault." it wasn't. i will always be guilty of it. i will always feel it was down to me. always. it was definitely not you — it was others. for decades, the full details of the worst treatment disaster in nhs history remained hidden. in 2018, though, after years of campaigning, a full public inquiry was finally set up.
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a formerjudge, sir brian langstaff, was appointed to run it. his job — to investigate why so many were infected and whether there was evidence of a cover—up by the health authorities. this is the largest public inquiry that has been held in the uk to date, and is a testament to all those who have campaigned over the decades. it's notjust about how it happened, but how it continued to be not dealt with, brushed under the carpet. they want a light shining on that and they would like people to be held accountable. they understand that obviously a number of key players are now dead, but they still want the inquiry to make findings that will give them some closure. in the early 1980s, doctors were only just starting to learn about hiv and aids, having to make some difficult decisions, balancing
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the possible risk of factor viii against the benefits it could bring to haemophiliacs. over time, that balance shifted. one of the key questions for the public inquiry is when a link could be made between american factor viii and the hiv risk to haemophiliacs. the inquiry has reviewed tens of thousands of documents, research papers, memos, letters, and they show there was a flurry of warnings sent to british doctors and the department of health around the start of 1983. in march that year, the centers for disease control in the us wrote to the head of haemophilia treatment centres in the uk, saying, "as you can imagine, aids is having a major impact "on the treatment of haemophiliacs. "we presently have 13 confirmed haemophiliac patients with aids "in the united states.
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"i suspect it's a matter of time before you begin to see cases in the united kingdom." despite this, treatment with us factor viii continued. then, in may 1983, one of the uk's top infectious disease experts sent this letter to the department of health, warning that there were cases of haemophiliacs contracting aids in the us and, therefore, "all blood products "made from blood donated in the usa "after 1978 should be withdrawn from use until the risk of aids "transmission by these products has been clarified. the health department said this would be premature and could put haemophiliacs at risk. then, just a month later, injune 1983, another warning — this time sent from the british embassy in washington to the department of health.
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parts of this letter have never been made public, until now. in stark terms, it spells out the dangers of us factor viii, saying that haemophiliacs were most at risk, as factor viii was extracted from paid donors, including those with dubious habits, and batches came from 2,000 to 22,000 donors. the timing of these warnings is important. it's clear that, by 1983, experts are becoming convinced that us factor viii could be directly linked to hiv infections in haemophiliacs. i see. you come back for your classes. how long before the plaster�*s off? throughout 1983, the then health minister, ken clarke, and other ministers, repeatedly said, "there was no conclusive proof" that aids could be transmitted in blood. the use of american factor viii by the nhs continued. documents show both pete and stuart were given american factor viii
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after the warnings were sent. their parents say the risks weren't shared with them. we weren't told of any risks about anything. the only thing we were told was that pete had hiv, um, and we just needed to be a bit careful with him. i don't actually remember somebody saying to me, "you do know that this stuff we're giving you could be contaminated?" the evidence suggests it took until the end of 1984 for the government to acknowledge that link between hiv transmission and blood products. by then, hundreds of haemophiliacs had been infected. as the scale of infections was starting to become clear, scientists found they could reduce the hiv risk in factor viii by heating it. by the end of 1985, all new batches
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were being treated in this way. but it was too late for children like stuart and pete. pete's still alive and fairly healthy, but there are some, also some hidden things. and pete being living on his own and not having a partner, ifind that sad. i blame the people that ignored the risks that was clearly there. there was evidence to suggest it was risky. i blame those people because there were so many people that didn't deserve to die. they were given a death sentence. something that should have saved their life... ..killed them. and still, 40 years later, there's no answers to that.
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more than half of the 380 children infected with hiv have died. forfour years, the public inquiry heard evidence from families, doctors and government ministers, past and present, among them ken clarke. this was genuine concern that these american blood products were causing aids, but there was no certainty. "no conclusive proof" is a perfectly accurate description of the then medical opinion. in other countries affected by this scandal, investigations were completed years ago. in some cases, compensation was paid and even criminal charges and prison sentences were seen. back in the late '80s, the defence was, "we couldn't have known and we didn't know." as bits of evidence came to light over 40 years, successive governments had
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a look at it. they went back to that position, which was, "we did nothing wrong. "it could not have changed. "and don't suggest otherwise. "nothing to see here. "it's all been looked at before." well, it hasn't and it should have been. in the uk, families have had a 40—year wait for answers. we all belong to a unique club, don't we? it's still always amazing how many people don't know about any of it. it happened so long ago. a lot of the message that went out was that it was unavoidable and just one of those things. and the inquiry is showing that that isn't necessarily the case at all. absolutely. they've found out vast amounts of information that had been... suppressed. ..suppressed for many, many, many, many years — hidden, covered up, whatever, they have discovered so much, um, to prove the wrongdoings.
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i think it's been brushed aside so much over the years. it's like an insult to... it is. ..the people we've lost. our family members lost their livesm — yeah. ..due to a condition that was avoidable. we're here on behalf of our younger brother, colt, who had haemophilia. he had infected imported factor viii. he died from the effects of aids, aged ten. colt was a joy. he had a beautiful personality. he liked to make things. he liked lego. he liked he—man. he liked superman. knight rider. colt was born on the 17th of april, 1982. i was like a mini mum at the age of 15. i was quite a young 13—year—old at the time, weren't i? he was diagnosed as hiv—positive
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in 1985, just after we came back from a family holiday. 0ur photos show happiness, joy, just normality, until he got diagnosed with hiv and then it's very different. it made us very protective of him, didn't it? yeah. um, you didn't tell anybody anything, but people found out from a next door neighbour that gave abuse to the family because they didn't want somebody with aids, hiv, living next door to them. people would say things like, "god, he's young to be gay, isn't he, at three?" yeah, i can remember that a lot. people said... quite a few people said that to me. how could he be gay at three? it was associated with that. that's how they thought he caught it. yeah. it's only now, sometimes you think back and realise what we went through. yeah. how people treated us back then. they generally wouldn't touch
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you or come near you. i remember going to school and people saying, like, "you shouldn't be here." especially when the tv adverts come out in the '80s. about aids. that then... that seemed to make people worse towards us. yeah. tv ad: there is now a danger that has become a threat to us all. - it is a deadly disease - and there is no known cure. it might be hard to appreciate now, but back in the 1980s, there was a huge amount of fear and stigma surrounding aids and hiv, and that had a massive impact not just on those infected, but on their families as well. i was seen as the tragic boy. i was a young boy with this, as opposed to an older person, where there would be a lot more questions. i feel like the stigma was intensified by the government's campaign. yeah. aids campaign. it was terrifying. i think they intended it to be scary
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to try and warn people, but they didn't realise the impact of, if you like, people that were suffering, they were... the scare got aimed at them as well. that made it worse then for the people that had hiv. it did. back in the day. absolutely did. because no—one wanted to come near you. one other major issue this inquiry has had to look at is how to compensate notjust those infected, but also those affected by this scandal, like their families. alongside the inquiry, the government appointed a leading barrister, sir robert francis, to set out who should receive money and how. the trauma, let alone the physical issues they went through, were, i thought, unprecedented. it was really important to try and devise something, which could produce a result for these unfortunate people quickly. they've already waited for decades, so i decided that what i would recommend would be that we needed a standard range of figures, which you would apply to everyone, whether they suffered really badly from this or not at all, because people experienced these
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things in very different ways. after receiving that report, sir brian langstaff, the chair of the public inquiry, did something unprecedented. in the middle of a public inquiry, he announced some early recommendations. he said that those infected and their bereaved partners should receive an interim compensation payment of £100,000 each, with full compensation to follow in the future. the government agreed. for the first time, those with hepatitis c or hiv, like pete, received compensation. compensation, it's an acknowledgement of something did go wrong and shouldn't have happened the way that it did. nine months later, in april 2023, sir brian langstaff went a step further.
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my conclusion is that wrongs were done at individual, collective and systemic levels. not only do the infections themselves and their consequences merit compensation, but so, too, do the wrongs done by authority. this time, he said that compensation should be extended to those affected for the first time, including the parents, siblings and children of those infected, and a body should be set up straightaway to make those payments. the government, though, didn't act, instead saying it would wait until the end of the inquiry. many families have so far received nothing. i don't remember my dad at my birthday parties, christmas. my grandad actually was the first person to tell me. he explained about my
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dad being haemophilia. he explained that he needed factor viii, and was infected with hiv. subsequently, passed that on to my mum, who was pregnant with my sister. all three have passed away. by the time sam was three years old, his mother, father and sister had all died as a result of hiv. sam was not infected. at first, when i was younger, i wasn't told the truth. my nan and grandad told me my dad died of a stroke, my mum died of cancer and my sister died of a hole in her heart. they had to tell me something. they couldn't tell me to go to school, and know how my mum, dad and my sister,
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they died of aids. because just imagine the backlash from that! that constant gutting feeling of sadness. that constant wondering why. wondering what it would have been like, what growing up would have been like. they've literally torn my family apart, ripped them away from me. please state your full name. rishi sunak. last summer, the prime minister was called back to the inquiry to explain why people like sam had not yet been compensated. the last thing i want to do is sit here and promise something else and give people false hope. and i want to be completely straight, right? this... i want to see resolution as quickly as practically possible. i've made that crystal clear. the actions of my government to date should give people some confidence and assurance that
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that is what we are working towards. but these are sensitive, complicated matters on a significant scale that require work to work through them properly. that work is happening. so it's hard for me to give a precise timeframe on exactly when and how these things will be resolved. but, an important step on that is receiving the final report, obviously. the final bill for compensation is likely to run into the billions. i think all governments of all complexions have failed to deal with this. this isn't a party political issue. this is something that the whole house, i think, can recognise. an injustice has been done and we need to sort it out. by december last year, mps from all parties had had enough of the delay. they forced a vote to speed up compensation payments. the ayes to the right, 246. the noes to the left, 242.
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the government lost. it was rishi sunak�*s first commons defeat as prime minister. the government, you know, has a healthy majority. they shouldn't be losing votes and the fact they lost that vote was a very clear sign that parliament was saying to government, "you need to get this sorted." people are dying and we can't wait. but five months on from that vote, families are still waiting for compensation. they say they care. if they really do care, they won't keep passing it on. they won't leave it to the next government. they'll sort it now. i don't think they care that much. no, they don't care. they talk about compensation, and you can't compensate for those lives that have been lost. you can't compensate for the missed opportunities that infected people didn't have. but you've got to
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address it in some way. every day that passes is just another adding to everybody's pain. a government spokesperson told panorama, "this was an appalling tragedy that never should have happened. justice needs to be done and swiftly. this includes establishing a new body to deliver an infected blood compensation scheme that will have all the funding needed once they've identified the victims and assessed claims." one person infected during this scandal dies every four days. on may 20th, the inquiry will publish its final report. all those involved hope it will finally answer their questions 40 years on from the treatment disaster that changed their lives.
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at minimum, i would like the government to apologise and look after the people who were damaged by this. they don't understand that we've lived with it, hidden it in us for all of that time. we want justice, acknowledgement. the only thing that is happening now is more people are dying. _ what exactly are they waiting for?
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live from washington, this is bbc news. israeli police break up anti—government protests in tel aviv, as its military recovers the body of another hostage in gaza. president zelensky says ukraine only has about a quarter of the air defences needed to fend off russian attacks, warning moscow could increase strikes,
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following recent gains near kharkiv. plus: the president of georgia vetoes a controversial new law on foreign funding that's sparked weeks of protests. we'll hear from the leader of georgia's opposition party in tbilisi. i'm helena humphrey. it is good to have you with us. we begin in the middle east, where thousands of protesters have gathered in israel, amid anger over president netanyahu's failure to secure the release of hostages still being held in gaza. these are the scenes in tel aviv. police have arrested some demonstrators and used water canon to disperse two rallies, which had merged. in the latest development, the israel defense forces say that they recovered the body of another hostage, identified as ron binyamin. in the latest sign of division within mr netanyahu's war cabinet, benny gantz has threatened to bring down the prime minister's
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government, unless he agrees to a far—reaching plan for gaza —

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