Latest news with #infectedblood
Telegraph
3 days ago
- Health
- Telegraph
Relatives of dead infected blood victims will get compensation
Relatives of dead infected blood victims will be eligible for compensation payments under Government plans. The change follows a heavily critical report into the way victims of the worst treatment disaster in NHS history were being compensated. A 'long overdue' memorial for thousands of victims of the scandal will also be created. Earlier this month, the Infected Blood Inquiry made a series of recommendations to improve compensation for people who were both infected with contaminated blood and those indirectly affected by the scandal. Sir Brian Langstaff, chairman of the inquiry, said the number of people who have been compensated to date is 'profoundly unsatisfactory' as he called for 'faster and fairer' compensation for victims. The investigation found victims had been 'harmed further' by the compensation scheme's failings. Responding to the report, the Government said that it was immediately accepting a number of the recommendations and will consult on others. It is not rejecting any of the recommendations. Affected people's claims will no longer 'die with them' and their payments will be passed on to their estates. People infected with HIV before 1982, who were previously ineligible, will be compensated - and the requirement for people with hepatitis to provide a date of diagnosis will be abolished. It said it will consult on a number of issues including: how the scheme recognises the impact of interferon treatment for hepatitis which has been linked to severe side effects; how the scheme recognises severe psychological harm; and it will also consult on the scope of how victims of unethical research are to be compensated. Elsewhere, the Government announced further interim payments to the estates of people who have died. It also confirmed that Clive Smith, president of the Haemophilia Society, will be the chairman of the Infected Blood Memorial Committee. Mr Smith will lead the work to create a national memorial to the victims of the scandal and will 'support memorials in Scotland, Wales and Northern Ireland'. Cabinet Office Minister Nick Thomas-Symonds said: 'When I appeared before the inquiry in May, I said that I would take a constructive approach and, carefully, consider the issues that had been put to me. 'I have concentrated on removing barriers to quicker compensation, working with IBCA, and am determined to deliver improvements based on this new report. 'Our focus as we move forward must be working together to not only deliver justice to all those impacted, but also to restore trust in the state to people who have been let down too many times.' David Foley, chief executive of IBCA, added: 'The community is at the heart of everything we do. We can only grow the service, and implement these new recommendations by listening to and acting on the views of the community. 'Some of the recommendations will take longer to implement, which we know may cause frustration and upset for some in the community. 'We will always act with transparency. That is why I can confirm that we will create a registration process, so that the community can tell us that they intend to make a claim. 'We will also develop the service for all groups, paying the first claims before the end of 2025. And we will improve transparency by sharing more of our processes, documents, data and plans on our website.' Incoming memorial committee chairman Mr Smith said: 'A memorial to the thousands who have died from the contaminated blood scandal is long overdue. 'It is a great privilege to be asked to lead this important work on behalf of the community. 'I look forward to working with the whole community across the UK on building an appropriate memorial to those we have lost and to act as a lasting memorial to the nation of what can happen when patient safety is not prioritised.' More than 30,000 people in the UK were infected with HIV and hepatitis C after they were given contaminated blood and blood products between the 1970s and early 1990s. More than 3,000 people have died as a result, and survivors are living with lifelong health implications. The Infected Blood Inquiry published its main report on the scandal in May last year, and a compensation scheme was announced a day later. But in the same week a general election was called and officials from the IBCA have described how in the early days of the organisation it consisted of two men, a laptop and a phone. Some £11.8 billion has been allocated to compensate victims, administered by the IBCA. As of July 15, 587 people have had their compensation paid totalling more than £400 million.
BBC News
3 days ago
- Health
- BBC News
Government makes major changes to infected blood compensation
The government has said it is making "substantial changes" to the compensation scheme for thousands of victims of the infected blood announcement was made in Parliament two weeks after a heavily critical report into the payment scheme by the chair of the public inquiry into the Office minister Nick Thomas-Symonds said he wanted to restore trust to people who had been "let down too many times".Victims' groups "cautiously welcomed" the announcement but said it was disappointing that some changes were still subject to further consultation. It is thought 30,000 people were infected with HIV, hepatitis B or hepatitis C in the 1970s, 80s and early 90s after being given contaminated blood products on the inquiry's main report into the scandal, published last year, found that too little was done to stop the importing of contaminated blood products from abroad at the time, and that elements of the scandal had been covered up by the health this month the inquiry's chair, Sir Brian Langstaff, published a 200-page follow-up report after receiving "email after email" expressing concerns about the way the government's £11.8bn compensation scheme for victims had been described the speed that payments had been made as "profoundly unsatisfactory" and said that victims had been "harmed further" by the way they had been treated over the last 12 months. Responding in parliament, the government said it would immediately accept seven of the 16 recommendations made by the inquiry related to the design of the scheme, with the others subject to consultation with Infected Blood Compensation Authority (IBCA), an arms-length body set up by ministers to administer payments, said it would separately accept all 11 recommendations under its changes being made include:A new system will be created allowing people to register for compensation rather than wait to be invitedSupport payments for widows of those who died in the scandal will be reinstated until their compensation claim is finalisedPeople infected with HIV before a 1982 cut-off date will now be able to claim compensation whereas before they were ineligibleThe size of a supplementary payment for victims who were subject to unethical medical research will be reviewed along with the type of patient who qualifies Thomas-Symonds said: "Our focus as we move forward must be working together to not only deliver justice to all those impacted, but also to restore trust in the state to people who have been let down too many times."The compensation scheme is open to those who were infected and also their family members, including parents, children and siblings, who can claim compensation in their own right as someone affected by the the old rules, family members who died before their own claim was settled would not have received any compensation has now been changed so if they die before 31 December 2031 their payment can be passed on through their government will also consult on a number of other issues including how the scheme recognises the impact of interferon treatment for hepatitis C which has been linked to severe side effects, and how severe psychological harm is said that the changes would cost £1bn on top of the £11.8bn already set aside to pay compensation over the course of this Parliament. An update on the total cost will be made in the next autumn Evans, the chairman of Tainted Blood, a group which represents 1,600 victims and their families, welcomed the announcement but said that some issues, including the level of compensation for hepatitis victims, had still not been properly addressed."The government is clearly listening to us. It's a shame that it took the further involvement of the inquiry for it to take our concerns seriously, but I hope that this statement marks the start of a better working relationship," he said."We must now press forward to ensure that this compensation scheme provides real justice, as far as money ever can, for all victims of this scandal."
The Independent
3 days ago
- Health
- The Independent
The new changes to the infected blood compensation scheme that will benefit victims
Victims of the infected blood scandal will see new changes made to the compensation scheme, officials have announced. It follows a heavily critical report on the way people were being compensated. Earlier this month, the Infected Blood Inquiry made a series of recommendations to improve compensation for people who were both infected with contaminated blood and people affected as a result. Responding to the report, the government said that it was immediately accepting a number of the recommendations and will consult on others. It is not rejecting any of the recommendations. And the Infected Blood Compensation Authority (IBCA) announced it will accept all recommendations relating to the compensation authority. Earlier this month, the probe into the scandal said victims had been 'harmed further' by failures in the compensation scheme. And the process has begun to create a 'long overdue' memorial for thousands of victims of the scandal, dubbed the worst treatment disaster in the history of the NHS. Sir Brian Langstaff, chairman of the inquiry, said the number of people who have been compensated to date is 'profoundly unsatisfactory' as he called for 'faster and fairer' compensation for victims. He said all victims should be able to register for compensation and should not have to wait to be called forward to start their claim. The IBCA confirmed it will create a registration process. The Government has also accepted a number of recommendations including: Affected people 's claims will not 'die with them' and their payments will be passed on to their estates; People infected with HIV before 1982 will be compensated – they were previously ineligible; The requirement for people with hepatitis to provide a date of diagnosis will be abolished. Meanwhile, it said it will consult on a number of issues including: how the scheme recognises the impact of interferon treatment for hepatitis which has been linked to severe side effects; how the scheme recognises severe psychological harm; and it will also consult on the scope of how victims of unethical research are to be compensated. Elsewhere, the Government announced further interim payments to the estates of people who have died. And it also confirmed that Clive Smith, president of the Haemophilia Society, will be the chairman of the Infected Blood Memorial Committee. Mr Smith will lead the work to create a national memorial to the victims of the scandal and will 'support memorials in Scotland, Wales and Northern Ireland'. Cabinet Office Minister Nick Thomas-Symonds said: 'When I appeared before the inquiry in May, I said that I would take a constructive approach and, carefully, consider the issues that had been put to me. 'I have concentrated on removing barriers to quicker compensation, working with IBCA, and am determined to deliver improvements based on this new report. 'Our focus as we move forward must be working together to not only deliver justice to all those impacted, but also to restore trust in the state to people who have been let down too many times.' In a statement to the Commons, Mr Thomas-Symonds told MPs he would go further than the inquiry's recommendation on affected states. He said: 'The inquiry recommended that where someone who would be an eligible affected person sadly died or dies between the 21 of May 2024 and 31 of December 2029, their claim will not die with them, but becomes part of the estate. 'I'm actually going to extend that by a further two years to the 31st of December 2031.' David Foley, chief executive of IBCA, added: 'The community is at the heart of everything we do. We can only grow the service, and implement these new recommendations by listening to and acting on the views of the community. 'Some of the recommendations will take longer to implement, which we know may cause frustration and upset for some in the community. 'We will always act with transparency. That is why I can confirm that we will create a registration process, so that the community can tell us that they intend to make a claim. 'We will also develop the service for all groups, paying the first claims before the end of 2025. And we will improve transparency by sharing more of our processes, documents, data and plans on our website.' Incoming memorial committee chairman Mr Smith said: 'A memorial to the thousands who have died from the contaminated blood scandal is long overdue. 'It is a great privilege to be asked to lead this important work on behalf of the community. 'I look forward to working with the whole community across the UK on building an appropriate memorial to those we have lost and to act as a lasting memorial to the nation of what can happen when patient safety is not prioritised.' More than 30,000 people in the UK were infected with HIV and hepatitis C after they were given contaminated blood and blood products between the 1970s and early 1990s. More than 3,000 people have died as a result, and survivors are living with lifelong health implications. The Infected Blood Inquiry published its main report on the scandal in May last year, and a compensation scheme was announced a day later. But in the same week a general election was called and officials from the IBCA have described how in the early days of the organisation it consisted of two men, a laptop and a phone. Some £11.8 billion has been allocated to compensate victims, administered by the IBCA. As of July 15, 587 people have had their compensation paid totalling more than £400 million.
Sky News
3 days ago
- Health
- Sky News
Compensation scheme for infected blood scandal widened
Why you can trust Sky News More victims of the infected blood scandal will qualify for compensation while others will get higher awards under changes to the scheme. The new rules mean estates of affected people who have already died will be able to claim payments. As well as this, around 1,000 people who are already eligible will be able to claim a higher amount, including chronic Hepatitis C individuals. The reforms are being introduced following 16 recommendations from the Infected Blood Inquiry, which published an additional report earlier this month. Confirming the changes, minister for the Cabinet Office Nick Thomas-Symonds said the government has "concentrated on removing barriers to quicker compensation". He added: "Our focus as we move forward must be working together to not only deliver justice to all those impacted, but also to restore trust in the state to people who have been let down too many times." Between the 1970s and early 1990s, more than 30,000 people in the UK were infected with HIV and hepatitis C while receiving NHS care. 1:21 Some 3,000 people have died after they were given contaminated blood and blood products, while survivors live with lifelong implications. In last October's Budget, Chancellor Rachel Reeves committed £11.8bn to compensate victims of the infected blood scandal, with the scheme opening at the end of last year. The changes will ensure that those who endured treatments with adverse side effects, such as interferon, will receive higher compensation to what is currently provided. Extraordinary intervention forces govt to act The government will now hope its response to Sir Brian Langstaff's criticism will be enough to convince the Infected Blood chair - and more importantly those infected and affected by this scandal - is listening and acting with urgency. The long-awaited report was published in May 2024. It was an afternoon charged with raw emotion. After decades of being lied to, ignored and gaslit, finally the infected blood community had found its champion. Someone who understood their pain and suffering. Sir Brian called on the government to deliver compensation quickly, knowing that many were dying before seeing justice delivered. But Sir Brian was not himself convinced. Even after the publication of the report he kept the Inquiry open. This is unprecedented. It showed that he feared there would be more stalling and further delays to payments. He was, sadly, proved right. It took an extraordinary intervention from Sir Brian last month to push the government to respond. It says it will implement all of the Inquiry's latest recommendations, some immediately and the rest after further consultation with the community. More people will now qualify for payment and others will get more compensation. And importantly the claims of victims will not die with them but instead can now be passed on to surviving family members. All hugely important revisions. The government says it understands the urgency. But it will also know it should not have taken an unprecedented intervention to force the issue. Higher compensation will also be available for the impacts currently recognised by the Infected Blood Support Scheme 'Special Category Mechanism' (SCM), which is provided to chronic Hepatitis C individuals who have experienced a significant impact on their ability to carry out daily duties. The government said the changes mean that over a thousand people will receive a higher amount than they would have under the existing scheme. Scheme widened to estates of deceased affected people The scheme will also be widened to some people who don't currently qualify. Under the current mechanism, if someone who was infected dies before receiving full compensation, then any final award can be passed on to their relatives through their estate. However while compensation is also available to family members affected by the scandal - a partner, sibling or parent of someone who was infected, for example, this claim dies with them if they pass away. The changes announced today mean that if the affected person has died after May 21st 2024, or dies in future before receiving compensation, their estate will be able to make a claim. Memorial plans announced The government also announced that Clive Smith, president of the Haemophilia Society, will be the chair of the new Infected Blood Memorial Committee. The project will include plans for a UK memorial and support memorials in Scotland, Wales and Northern Ireland. In line with the Infected Blood Inquiry's recommendation, the committee will also develop plans for commemorative events and is planning to hold the first by the end of 2025. Mr Smith said the memorial is "long overdue". He added: "It is a great privilege to be asked to lead this important work on behalf of the community. "I am conscious that we are already behind in relation to implementing the Infected Blood Inquiry's recommendation that community events be held on a six-month basis post the Inquiry reporting. We intend to correct that by the end of this year. "I look forward to working with the whole community across the UK on building an appropriate memorial to those we have lost and to act as a lasting memorial to the nation of what can happen when patient safety is not prioritised."
Telegraph
09-07-2025
- Health
- Telegraph
Factor VIII was advertised as a wonder drug
Scroll to begin It was said to offer people with haemophilia a passport to a normal life But in reality, it was a poison made by American pharmaceutical companies using thousands of high-risk donors One infected plasma donor was all it took to contaminate an entire batch Supplies were imported into Britain in the 1970s and 1980s for use by doctors facing a shortage of blood-clotting treatments Thousands of people were infected with HIV and hepatitis C as a result Many died. Others struggle on, still awaiting justice This is their story Cara McGoogan 09 July 2025 2:00pm BST Gift this article free The infected blood scandal can only be described as a catalogue of heartbreak. More than 30,000 people in the United Kingdom were affected by contaminated blood products or transfusions, nearly 3,000 of whom have died. More die each year, while survivors continue their decades-long battle for truth and compensation in the face of cover-up and dismissal. In May 2024, after five years of investigation, an inquiry into the worst treatment disaster in NHS history will publish its final report. Victims are hoping for answers on how the crisis was allowed to unfold. But the heart of the story had already been written, in the shape of distorted lives, pain, stigma, sickness and loss. And as a new report released on Wednesday said, its victims are being "harmed further" still by long waits for money promised to them by the state. Gwynneth and Steven Walker 'There was never a future for him, it was always just a few more months or another year if you were lucky.' Steven Walker was three years old in 1983 when he was found to have severe haemophilia A. The diagnosis came after months of being shuttled back and forth to the doctors with unexplained bruises, a result of the genetic bleeding disorder, which prevents the body from forming clots. It was almost a relief to his mother, Gwynneth, who had faced accusations of harming her son. 'We tried to wrap him up in cotton wool,' she recalls. With a diagnosis, Steven could start treatment with cryoprecipitate, a frozen plasma product made from the blood of a single donor. But in June 1984, after the family had moved to Norwich, he began a new regime – one that would ultimately prove deadly. Steven received his first dose of Factor VIII on the recommendation of a local doctor, who suggested he be treated at home with the blood-clotting protein. Like many parents of children with haemophilia, Gwynneth learnt to mix the Factor VIII concentrate with sterile water and inject it into her son's arm. While she was completely unaware of the risk in doing so, by 1984, it was already known that acquired immunodeficiency syndrome (Aids) was caused by a blood-borne virus, HTLV-III, which could be passed on through the type of treatment he was receiving. At that stage, there was an alternative, safe version of the imported Factor VIII available, which had been heat-treated to kill off potential viruses. The UK had been slow to fully adopt it, in part because of cost, but haemophilia treatment guidelines set out that new patients should be given the heat-treated product or cryoprecipitate. Still, Gwynneth took her doctor's word, and did as they had suggested, unwittingly using the contaminated version of Factor VIII. Many other patients would receive the same, into 1985, because of a sluggish response by officials and the NHS to adopt the new, more expensive but safe treatment. Within a year, serious illness had gripped the family. In December 1985, her skin turned yellow with jaundice. While receiving treatment in hospital, she was told she should be tested for hepatitis B – a liver infection – because of Steven's haemophilia. 'I had never heard of hepatitis,' Gwynneth, 67, says. Doctors and the government had known Factor VIII could contain hepatitis since the 1970s, but had continued to import higher risk American supplies, rather than building up UK stocks of the plasma treatment. Both Gwynneth and Steven, then four, tested positive for the illness. She had contracted it by removing a splinter from her son's finger with her mouth. 'You wouldn't do that if you thought you were at risk, would you?' she says. But worse was still to come. Further tests revealed Steven had contracted HIV. In the wake of the diagnosis, Gwynneth was told by doctors that she had to protect her son from his younger brother, then aged one. Steven was given 'two years to live', she says, 'and not much more'. For six weeks Gwynneth locked herself away at home with her sons, trying to process the news. She decided not to tell Steven the news of his diagnosis, choosing to put off doing so for as long as she could. 'I was absolutely distraught,' Gwynneth says. 'I was looking at my child, planning his funeral. And wondering about the little one and how I could protect him. 'You look at your own flesh and blood and you're frightened to cuddle him. It ended up crippling me. You put your trust in doctors and they told me untruths.' In an attempt to slow his deterioration to Aids-related illness, Steven was prescribed the antiretroviral drug AZT, a retired cancer treatment that often had the opposite effect because it was prescribed in dangerously high doses in the early days of the Aids crisis. But the entire course of his life had changed and by 13, he was too frail to go to school, forced to watch on as his little brother ticked off childhood landmarks, such as riding a bike and getting a first girlfriend, that he was unable to match. 'He was brutally wounded by that,' says Gwynneth. 'He was starting to get angry and annoyed, so it seemed he was getting to an age where maybe he needed to know [about his diagnosis].' On learning that he had HIV, Steven was 'horrified'. 'He felt cheated,' says Gwynneth, and retreated into himself as his teenage years progressed. She taught her son to lie about his condition, in order to try to protect him from the stigma that surrounded it. 'I'd been teaching them [her sons] how to keep secrets since they were small about trivial stuff, so that when the biggie came along they'd keep the secret,' she says. He couldn't make friends, go to university or get a job because he was too unwell. The only guests at his 18th birthday party were his nurse and his driving instructor. 'There was never a future for him, it was always just a few more months or another year if you were lucky. There are several times I reflect back on and wish he'd died sooner because he suffered so much and was so ill,' says Gwynneth. 'From 13, his life was really over. He died at 37, but after 13 the rest of it was just suffering.' Gwynneth recalls one of several recurring nightmares Steven would endure – of making breakfast for two daughters he would never be able to have. 'He felt that his life had been robbed from him and he felt angry,' she says. As an adult, Steven turned to alcohol and drugs, including heroin. For the last six years of his life, he would fall asleep on his sofa each night after drinking several bottles of wine, topped off with whiskey. 'We just watched him waste away,' says Gwynneth. 'He was about 5ft 11 and when he died he was under seven stone.' In July 2017, two months before Steven died, then-prime minister Theresa May announced the Infected Blood Inquiry. It was the smallest measure of relief, Gwynneth says, for a life pockmarked by avoidable agony. The inquiry had raised Steven's hopes for compensation, which he dreamed of using to buy himself an apartment, but years of government inaction meant nothing was forthcoming before he died. 'He used to say: 'The government has done this to me',' she says. 'At every step of the way there were people at fault: from the doctors who knew [the risks and didn't tell us] to the government ministers who have failed us ever since. 'I feel like he was murdered,' says Gwynneth. 'He didn't live long enough, and now my son will never get justice.' Jo-Anne Cohrs and Keith Proud 'I whispered in his ear that Jesus loved him, that he'd done a good job, and to go when he'd had enough.' Keith Proud entered Jo-Anne Cohrs' life with uncharacteristic confidence in 1980, when he gatecrashed her 21st birthday party. Keith was 10 years older but, like Jo-Anne, an undergraduate at Sunderland Polytechnic. He joined as a mature student after a childhood interrupted by haemophilia A. Keith was a shy media studies student. Jo-Anne was a lively musician and member of a Christian rock band. They were exact opposites: she thought he was quiet, he didn't quite know what to make of her high energy. 'But funnily enough we both rubbed off on each other quite well,' says Jo-Anne, 64. 'I sort of tamed down a bit as I got to know him and he became a bit more outward.' After university, Jo-Anne and Keith toured Europe, driving to Italy and back again. Every other day on the trip, Keith would inject himself with Factor VIII, which he had been using since it first became available in the mid-1970s. Within three years, they were planning their wedding. But shortly before the big day in December 1983, Keith came down with what appeared at first to be a heavy flu. 'He was very cold,' says Jo-Anne. 'Looking back, I think he might have even had it then.' It was a new illness that had emerged in the US among gay men – Aids. Totally unaware of the true severity of his condition at the time, Keith eventually bounced back from what had developed into a bout of pneumonia and returned to work as a lecturer in 1984. For a few months, life for the couple was good. Jo-Anne was a teacher's special needs assistant and after years of muddling their way through studies, the couple suddenly felt flush with cash. 'We had so much money we didn't know what to do with it,' she says. For Christmas, they splashed out on gifts for their family. But almost immediately after their 'fantastic' festive period with loved ones, the couple received a life-altering letter from Keith's local hospital. 'He had HIV,' says Jo-Anne. 'We were both shocked.' 'Over the next two or three months, Keith started to get very, very afraid,' she says. 'He started to come down with things: red dots in his mouth, then his skin had lumps and bumps from Kaposi's sarcoma, lots of candida and thrush in his mouth. He couldn't keep anything down, the tablets made him sick; everything made him sick.' Physical pain and symptoms were accompanied by the vicious stigma that defined the early days of the Aids crisis, leaving many who suffered with the condition socially outcast and isolated. Jo-Anne tried to shield Keith from as much of it as she could. She even stopped letting him watch live television at home, for fear he would see a public health advert or coverage of the crisis that would upset him. 'I didn't want him to be frightened,' she says. 'I wanted him at least to have peace at home.' But the outside world was impossible to control, and when Keith told his dentist he had HIV, they refused to treat him. They told him 'don't bring your wife back either', says Jo-Anne. 'Those words are cemented in my brain.' Within a year of his diagnosis Keith and Jo-Anne were forced to leave their jobs; he had become too unwell to work and she opted to stay at home to care for him. Their social life ground to a complete halt and their increasingly precarious financial situation forced the couple to apply for benefits. The local church became a vital lifeline of support. Fellow congregants would visit daily, and go to the shops on their behalf. Meanwhile, doctors advised Jo-Anne to wear gloves to protect herself from Keith. She refused. 'I'm not going to treat my husband with gloves,' she recalls thinking. 'If he needs a cuddle or a kiss or closeness, whatever he needs I'll be there.' Despite Jo-Anne's care, Keith's health continued to decline over the next two years and by the beginning of 1987, the pair became aware his death was fast approaching. He passed away in the spring, on March 6, with his wife, then 27, and family at his side. 'I whispered in his ear that Jesus loved him, that he'd done a good job, and to go when he'd had enough,' Jo-Anne says. After years of anguish that followed, Jo-Anne painstakingly rebuilt her life, remarrying and having a daughter with her new partner. But she still only lives half a mile from where she first met Keith at the party in Sunderland. 'I'm not over how things turned out,' says Jo-Anne, adding that what upsets her most deeply now is the 'incredulous amount of time' it has taken the Government to compensate victims. The government has set aside £11.8bn for those affected by the scandal, but many have expressed concerns about the way the scheme has been managed to date. The long wait times some have endured, or continue to endure, for payment is a particular issue. 'There are still a lot of people who are seriously ill and who are going to meet an untimely, undignified death,' says Jo-Anne. 'And for those people, they should be given everything they need until they die. It's upsetting for me. But at least I'm not facing a relative who's going to slip away with that cruel death right in front of me, right now.' Christopher, Gary and Kelvin Marsh 'I'm still here and no one else is. My world has just fallen apart.' Haemophilia often affects more than one child within a family, passing most commonly from mothers to sons. That was the case for the Marsh family – Gary, Kelvin and their youngest brother Christopher, all three of whom were born with haemophilia A. As a child, Christopher says, he hated having treatment for his illness. 'I used to run around the hospital not wanting it,' he says. 'But Mum and Dad would say I'd have to sleep there if I didn't.' He remembers being given cryoprecipitate. His brothers, meanwhile, received Factor VIII. What they shared was a refusal to let illness get in the way of life – playing rugby, skateboarding and riding motorbikes instead. That was, until Gary and Kelvin tested positive for HIV – a by-product of the Factor VIII they had been given – in the 1980s. Christopher had avoided contracting the illness but was found to have been infected with hepatitis C, which slowly attacks the liver and can lead to cirrhosis and cancer. 'It changed our lives instantly,' says Christopher, 49. 'We were living with the fact that they were like a ticking time bomb and could die at any time.' While Christopher's elder brothers both went on to marry and have families of their own, the family's worst fears were realised when Gary became the first of the three to fall seriously ill at the beginning of the 1990s. He initially tried to maintain the partygoer spirit that had defined his life until that point, but eventually realised those days were behind him when he was forced to leave his stepdaughter's wedding because of sickness. 'That really upset me because I couldn't understand,' says Christopher. 'He had been so healthy and loved life, then I saw him deteriorating.' His brother, 13 years his elder, suffered with ulcers, contracted pneumonia and 'became gaunt' as his condition took hold. On Boxing Day 1992, Gary died from Aids-related illness, aged 30. He was never able to take the trip to the US and the Bahamas the siblings had been planning together, shortly before he passed away. 'Kelvin said, 'Gary would have wanted us to go',' recalls Christopher. 'So we still went.' But being positive for HIV himself, Kelvin couldn't help but see his own future in his brother's death. He was in his late-20s and married with two young children, a girl and a boy. 'I remember being on holiday and him sitting there saying he wasn't scared of dying himself, but for the ones he would leave behind,' says Christopher. Eight years later, Kelvin's HIV progressed to Aids. After a failed liver transplant, he died in April 2000, aged 35. By the end of the year, their mother had also passed away. 'Everyone said it was from a broken heart, but obviously you can't prove that,' says Christopher. In the wake of repeated tragedy, Christopher sunk into depression. 'I thought, as soon as I hit my 30s I'm going to die,' he says. 'Because both my brothers were in their 30s when they died. 'We never got a choice. We believed we were given the best care we could have been, not knowing it was contaminated.' Christopher is currently undergoing treatment to try to clear his hepatitis C, but had to stop work as a painter and decorator last year because of pain in his lower abdomen. His life has been curtailed in more profound ways, too. While Christopher has a partner, step-children and grandchildren, he never had children of his own. He was too scared to try, in case he transmitted his illness to them via his partner. And like so many others in the infected blood scandal, he remains plagued by survivor's guilt. 'I'm still here and no one else is,' he says. 'My world has just fallen apart. I feel alone. I had two brothers and now it's just me and my sister left. I miss them so much.' Gary Webster 'We'd had Factor VIII pumped into us; people were going yellow; people were getting ill and we knew there was something wrong.' Life changed overnight for Gary Webster in 1975 when, aged nine, he started boarding at the Lord Mayor Treloar College in Hampshire, a school for children with physical disabilities. He learnt to sail, struck up friendships and ran wild in the dormitories at night. He also had his first dose of Factor VIII. The treatment initially gave him a sense of freedom after a childhood defined by haemophilia – one spent waiting hours for cryoprecipitate to defrost, transfuse and take effect. Similarly relishing in the newfound liberation was Gary's best friend Stephen, whose family were farmers in Norfolk. The pair stayed up late talking to local people on their CB radio and, when they were older, snuck up to London to watch David Bowie in concert. They planned to live together after leaving school at 18. Whenever they had a bleed, day or night, they could go to the onsite NHS-run haemophilia centre for treatment. But amid the idyllic life Treloar's initially appeared to offer, there were also signs that things were, in fact, going badly wrong. Gary and other boys were regularly bed-ridden for weeks with serious illnesses, including hepatitis and glandular fever. And by the outset of the 1980s, Gary noticed the amount of Factor VIII they were given dramatically increased. 'I'd have to give myself injections every other day,' he says. 'It was so monotonous. I thought, 'Why do I need it when I haven't got a bleed?'' When Gary questioned the school's doctors over the regime, he was told it was to prevent bleeds. But his friend Stephen had another theory: 'I'm sure they're bloody experimenting on us,' he said. In their final few months at the school, in springtime 1983, Gary and Stephen, then 17, were abruptly called out of class. The doctor wanted to see them. 'I've got something to tell you,' said Dr Mounir Wassef. Both the boys had signs of a newly emerging illness, Aids. 'It is incurable and we cannot guarantee you will be alive in two to three years,' he said. They were among the first people in Britain to be diagnosed with the life-threatening condition, a year before HTLV-III was discovered and the link between Factor VIII and the illness was accepted by the government. 'We just couldn't believe what he was saying,' recalls Gary, 59. 'We were shocked but we were young. We looked at each other and half smiled. Then we went back to class.' The doctors left it to Gary and Stephen to inform their parents. 'My mum and dad had to inject me when I was a young lad,' says Gary. 'They put their trust in the college, the doctors and the staff. They felt guilty and upset.' His parents were told little about their son's treatment by the doctors at Treloar's. They didn't know what brand of Factor VIII he was receiving, or how often he was being treated, and nothing of the associated risks. They were even kept in the dark when Gary contracted hepatitis and glandular fever. 'If it wasn't for me telling them what was going on while I was at the college, they wouldn't know anything,' he says. After receiving their diagnoses, Stephen's health declined more rapidly than Gary's and by 1991 he was suffering with Aids-related illness. For a while, he tried to hide it, but eventually he confided in his friend. 'I think I've got it,' Stephen said. 'Join the club,' replied Gary, whose own descent into illness was also quickening. Later that year, Gary was told by Stephen's father that his friend had been hospitalised with pneumonia. Knowing Stephen would never make it out, he made the long, sorrowful journey from Hampshire to Norfolk to say goodbye. Like other Treloar's boys, Gary had grown accustomed to seeing school friends grow poorly, witnessing their decline at regular reunions, and paying his respects at the funerals that followed. After Stephen's death he stopped going to both. 'It got too hard,' he says. 'Every time you went to the reunions there were less and less people. The funerals were every year from the late Eighties into the Nineties. 'I had a big group of friends who were haemophiliacs – and [then] there weren't that many of them any more.' In 1996, an effective antiretroviral treatment based on a new combination of drugs was introduced, helping Gary to come back from the brink. 'It was pot luck that treatment came in when it did,' he says. 'Others got ill too early.' But 15 years later, in 2011, he was forced to retire, aged 46, from his job at the Red Cross because of hepatitis C. It was a second, major professional blow, having earlier been forced to abandon his dream career as a tailor in the 1990s. 'It was so difficult to get up and go to appointments,' he says. 'The fatigue and brain fog was just awful.' Without work, Gary turned his focus to campaigning, joining a group of boys from Treloar's who had come together to demand answers over how 122 of the school's pupils had been allowed to contract viruses including hepatitis C and HIV. He was fuelled by anger about his own condition, and the fate met by Stephen, one of 80 boys from the school who died as a direct result of the infected blood scandal. 'I went on my first campaign demonstration to [then-Prime Minister] David Cameron's constituency,' he says. In 2017, Gary was one of more than 1,000 survivors and bereaved relatives who came together and sued the Department of Health for misfeasance in public office. Soon after, Theresa May announced the Infected Blood Inquiry. 'I campaigned to get the inquiry going with Theresa May,' says Gary. 'I've made posters and press releases, written to MPs and travelled to London with my MP and local councillor.' The inquiry opened in 2019. Two years later, it dedicated a week of hearings to Treloar's, during which evidence emerged confirming that children at the school had been part of research, including how effective preventative treatment was for haemophiliacs, and what brands of Factor VIII were more likely to transmit hepatitis. Both these trials involved being injected with high-risk Factor VIII imported from the United States and, at times, placebos. Present at the hearings, Gary realised he had been put onto a trial in his first year at the school, without being told. Its former headmaster, Alec Macpherson, said he had known about the research but avoided probing the school's NHS-affiliated doctors because he trusted them. 'We knew our own story; we'd lived it,' says Gary. 'We'd had Factor VIII pumped into us; people were going yellow; people were getting ill; we knew there was something wrong. 'We also knew we could have been on cryoprecipitate. But that week, Alec Macpherson said 'doctors are gods' and [admitted] that he didn't question them in his weekly meetings. We found out we had been on placebos for trials.' On the back of the revelations, Gary moved to sue Treloar's for breaching its duty of care. 'Treloar's have to answer for what happened under their watch,' he says. 'We were at school without our parents – they basically were our parents.' Looking ahead, he wants to see a memorial built at Treloar's for the pupils who died – a measure of justice, in other words, at long last. 'It has to be a life-changing amount of money,' he says of the promised compensation. 'Eighty boys have passed and that's only going to increase over the next few years. People's lives have been ruined; people have lost loved ones – how much [value] do you put on that?' Listen to Bed of Lies, a six-part Telegraph podcast laying bare one of the biggest medical disasters in history, on Apple Podcasts, Spotify or your preferred podcast app. Header video credit: Bad Blood: A Cautionary Tale, Blood Brothers - The America Blood Scandal / Image Productions film / H.O.P.E films.
