Latest news with #haemophilia
News.com.au
21-05-2025
- Health
- News.com.au
Aussie researchers and ASX biotechs driving paediatric drug breakthroughs
Australia has become well-known for its paediatric drug discovery with several life-altering treatments CSL is a global leader in developing therapies for children with haemophilia and other serious blood disorders Neurotech International is at forefront of developing cannabinoid-derived therapies for paediatric neurological disorders Australia may lack the size and funding of larger global biotech hubs, but it consistently punches above its weight in paediatric drug discovery. From life-altering treatments for rare genetic conditions to vaccines that have reshaped public health, Aussie researchers and ASX-listed companies have and continue to deliver breakthroughs improving and in some cases saving young lives globally. Among these advancements is Australia's largest biotech CSL (ASX:CSL), which has become a global leader in developing therapies for children with haemophilia and other serious blood disorders. Its paediatric haemophilia products — including Afstyla and Hemlibra — allow young patients to live more freely and safely. CSL also played a pivotal role in bringing Gardasil to the world – the revolutionary human papillomavirus (HPV) vaccine co-developed by former Australian of the Year Professor Ian Frazer at the University of Queensland. The vaccine is helping to protect millions of girls and boys from HPV-related cancers. In the 1990s Dr Sandra Anderson and colleagues at Sydney's Royal Prince Alfred Hospital (RPAH) started research into how inhaled mannitol can be used to diagnose asthma. Their work resulted in development of two new pharmaceutical products: • Aridol – to identify bronchial hyperresponsiveness and assist in asthma diagnosis. • Bronchitol – to treat patients with bronchiectasis and cystic fibrosis (CF) by helping clear mucus from their lungs. In 2001 Pharmaxis now Syntara (ASX:SNT) licensed patents for respiratory products from the Central Sydney Area Health Service (which included RPAH). Pharmaxis funded later stage clinical trials necessary to get Aridol and Bronchitol, which are now available world-wide, approved. Its shares peaked in 2007 at over $4 a share – for a roughly $800 million market cap – mainly on its Bronchitol hopes. The company announced sale of its mannitol respiratory unit, which included Aridol and Bronchitol, in October 2023 along with its rebrand to Syntara and change of focus to haematological malignancies. On the ASX, several healthcare players are cooking up the next-gen of paediatric therapeutics. Neuren targets various rare diseases In 2023 Neuren Pharmaceuticals (ASX:NEU) became the darling of the Aussie bourse after its US partner Acadia Pharmaceuticals secured US Food and Drug Administration (FDA) approval for trofinetide to treat Rett syndrome. Marketed as Daybue, it is the first drug to treat the rare neurological disorder which emerges in infancy and is a profoundly debilitating neurological condition affecting predominately girls. And Neuren hasn't stopped there. It's also advancing NNZ-2591 in clinical trials for a suite of other rare paediatric syndromes – including Angelman, Phelan-McDermid, and Pitt-Hopkins — for which there are currently no approved treatments options. Neuren is also developing NNZ-2591 to treat neonatal hypoxic-ischemic encephalopathy (HIE). "HIE is a devastating type of brain injury caused when a baby's brain does not receive enough oxygen or blood flow before or shortly after birth," CEO and managing director Jon Pilcher told Stockhead. "It is one of the leading causes of neonatal death and neurodevelopmental disability. He said Neuren aimed to provide a highly differentiated form of treatment continuing beyond the neonatal intensive care unit to target the long-term outcomes for these children. "Neuren's whole business is aimed at trying to improve the lives of the children and their families that are so impacted by all of these conditions," he said. "The whole team is highly motivated by that mission, building on scientific foundations from Australia and New Zealand." Argenica Therapeutics (ASX:AGN) has been targeting neonatal HIE for nearly a decade, alongside other acute neurological conditions such as stroke and traumatic brain injury, with its novel therapeutics aimed at reducing brain tissue death. Its first published paper out of the Perron Institute in Western Australia was in 2018. The study was run by Dr Adam Edwards, who leads Argenica's preclinical neonatal HIE program. Both Argenica's therapeutic candidates ARG-006 and ARG-007 are being investigated for their respective safety and efficacy profiles in HIE, offering different therapeutic options for the treatment of the condition. The FDA has granted both ARG-006 and ARG-007 ODD and Rare Paediatric Disease Designations (RPDD), qualifying Argenica for significant incentives. Neurotech tackles paediatric neuro disorders Neurotech International (ASX:NTI) is at the forefront of developing cannabinoid-derived therapies for paediatric neurological disorders, led by its proprietary oral formulation, NTI164. Derived from a unique cannabis strain with ultra-low THC ( Following the path of successful companies like Neuren, Neurotech is advancing treatments for Rett syndrome, having completed a phase I/II trial with promising results and an extension study currently underway. NTI164 has been granted orphan drug designation (ODD) by both the US FDA and the European Commission, reinforcing its potential as a differentiated therapy in this rare disease. Beyond Rett, Neurotech has completed multiple paediatric clinical programs with NTI164, including: • A phase I/II and phase II/III trial in Autism Spectrum Disorder (ASD) • Phase I/II trials in PANDAS/PANS (Paediatric Autoimmune Neuropsychiatric Disorders and Acute-Onset Neuropsychiatric Syndrome) "Neurotech is redefining the potential of cannabinoid-derived therapies in paediatric neurology," newly appointed CEO and managing director Dr Anthony Filippis told Stockhead. "With NTI164, we're not just targeting symptoms, we're aiming to shift the treatment paradigm for conditions like Rett syndrome, ASD, and PANDAS/PANS. "The orphan drug designations in the US and Europe affirm the unique promise of our approach, and we're committed to advancing NTI164 towards approval and access for the families who need it most." Dimerix tackles leading cause of kidney failure in children Dimerix (ASX:DXB) is focused on the rare kidney disease focal segmental glomerulosclerosis (FSGS) with its lead phase III drug candidate DMX-200. CEO and managing director Dr Nina Webster told Stockhead FSGS affects both adults and children damaging filtering units of the kidneys, leading to permanent damage and eventual organ failure. 'FSGS is one of the leading causes of kidney failure in children, with 20% of all presentations of nephrotic syndrome in paediatric patients caused by the disease,' she said. 'This is a disease for which there are no treatments available anywhere in the world and 60% of those who do get a transplant get reoccurring disease in the transplanted kidney. 'This is a very poor prognosis and in particular for children who will live with life-long dialysis.' Dimerix's phase III study of lead drug DMX-200 in FSGS is titled Angiotensin II Type 1 Receptor (AT1R) & Chemokine Receptor 2 (CCR2) Targets for Inflammatory Nephrosis – or ACTION3 for short. The second interim analysis of its ACTION3 trial is forecast in around mid-CY25. DMX-200 has been granted ODD in the US and Europe, as well as the equivalent Innovative Licensing and Access Pathway (ILAP) designation in the UK. Mesoblast gains world-first approval for treatment Mesoblast (ASX:MSB) has developed Ryoncil (remestemcel-L) for the treatment of steroid-refractory acute graft versus host disease (SR-aGvHD) in paediatric patients two months and older, which is the first FDA approved mesenchymal stromal cell (MSC) therapy. Resulting from bone marrow transplants, GvHD is a life-threatening condition with high mortality rates. Mesoblast said in the US about 10,000 patients undergo a bone marrow transplant annually with donated tissue, 1500 of whom are children. About half of them will develop GvHD and 50% of these won't respond to steroids. Ryoncil applies to patients resistant to steroids, the standard-of-care treatment. Mesoblast is also targeting the children's disorder hypoplastic left heart syndrome, for which it has rare paediatric disease designation from the US FDA for its allogeneic cell therapy Revascor.
Telegraph
20-05-2025
- Health
- Telegraph
The British Blood Scandal, review: a story to fill you with rage
It's a dull cliché to compare every national scandal to Mr Bates vs the Post Office, but The British Blood Scandal: Poisoned at School (ITV1) had enough jaw-dropping moments for a Gwyneth Hughes or a Jack Thorne to spin out half a dozen establishment-shaming mini-series. Unlike when Mr Bates aired, however, the campaigning is largely done, last year's Infected Blood Inquiry having found catastrophic failings and the government announcing a £11.8bn compensation fund for victims. That doesn't stop this documentary from filling you with the same eye-pricking, skin-tingling rage that the Horizon scandal did. The story it tells is unfathomable. The Lord Mayor Treloar's College in Hampshire, set up in 1907, is a specialist boarding school for children with various disabilities. In the 1970s and 1980s it was a 'haven' for boys with haemophilia, with the 24-hour care allowing them to treat bleeds instantly and giving the pupils the chance at a normal life. In an idyllic countryside setting, the boys could sail, fish, ride bikes and play football. Better still, they had access to what they were told was a revolutionary 'wonder' treatment, Factor Eight. There were gifts for taking part in the treatment, punishments if you missed it. 'It was really pushed, everyone was on it,' said Richard, one of four former Treloar's boys – all of whom contracted hepatitis, HIV or both at the school – who made the backbone of this devastating film. The plasma – much of which was imported from the US, where private companies would often recruit from the homeless – was infected. Doctors at Treloar's, whose haemophilia unit was run by the NHS from 1978, were aware of the high risk of infection with the imported plasma. Not only did they not change anything about the treatment, they doubled down, using the boys for research projects. 'Guinea pigs. Lab rats. They exploited that opportunity to do research on children,' said Steve, another former pupil, barely able to get that final word out of his mouth. 'I'll never forgive them for that.' The truly sickening thing is the implication that at every level – pharmaceutical, government, the school – the risk of infection was known. All four of the courageous men here – Richard, Steve, Ade and Gary – told their stories with dignity, but they never stopped reminding us what a privilege it was that they could do so at all. 'We used to come back to the school for reunions every year,' said Ade, 'and every year we'd lose two or three guys.' Of the 122 haemophiliac boys to have gone to Treloar's, around 90 have died. There were details in Tom Whitaker's film that hit like a hammer. Ade remembers being invited to one of his doctor's houses to play with the doctor's son, and finding the man crying. 'We f--ked up,' he said, 'we f--ked up, boys.' Another pupil, Neil, was diagnosed at the school as HIV+ when he was 12. His mother, Angela, was not told for three years. 'I sent him to his death,' she said. 'He was a good boy.' It was 1983 when the Mail on Sunday ran the front-page headline, 'Hospitals using killer blood'. The teachers at Treloar's hid the newspapers that day. It wasn't until 2024 when Richard, Ade, Steve and Gary got to give their evidence to an inquiry, now grey-haired men in their 50s, most of their mates dead.
Daily Mail
20-05-2025
- Health
- Daily Mail
Victim of Britain's infected blood scandal recalls horrifying moment he was told he 'might only live for a few more years' aged 15 - after doctors infected him with HIV
A man has revealed the horrifying moment he was given a HIV diagnosis aged 15 after unknowingly being given infected blood as a child. Adrian Goodyear was among the haemophiliac children sent to specialist boarding school Lord Mayor Treloar College in Hampshire for a 'normal childhood' but instead became a victim of medical research. The final report of the Infected Blood Inquiry, released last year, found that medical staff used children at the Hampshire school in the 1970s and '80s as 'objects for research' and ignored the risk of pupils contracting hepatitis and HIV. Of the pupils who attended the Lord Mayor Treloar College, 'very few escaped being infected' and of the 122 pupils with haemophilia that attended the school between 1970 and 1987, only 30 are still alive. Pupils at the school in Hampshire were given treatment at an on-site NHS centre. But it was later found that many pupils with the condition had been treated with plasma blood products which were infected with hepatitis and HIV. Inquiry chair Sir Brian Langstaff, concluded that children at Treloar's were treated with multiple commercial concentrates that were known to carry higher risks of infection and that staff favoured the 'advancement of research' above the best interests of the children. Adrian has banded together with a group of three other former pupils to highlight the atrocities they experienced throughout their childhood in a new ITV documentary, The British Blood Scandal: Poisoned at School, which airs on ITV tonight at 9pm. Talking in the show, Adrian recalled the moment a doctor called a group of students to the NHS centre and informed them of their diagnoses in a carefree manner. 'We were 15 and we were asked to go to the haemophilia centre,' Adrian recalled, continuing, 'One of the nurses was tearful, really tearful, and that made us really uncomfortable because nurses don't cry really.' He told how the doctor got on with the diagnoses 'fairly quick'. Adrian continued, 'He said that we all had an issue with HIV. 'He lifted his left hand and went round the room, and he said, 'You have it, you haven't, you have, you haven't, you have,' and I was the one at the end. I got HIV'. 'One lad said, 'How long have we got?' He [the doctor] said, 'Two to three years, but we'll do our best for you'.' Elsewhere, another pupil called Gary Webster shared his reaction to receiving the news, 'I think I laughed, probably a nervous laugh or something, we just shook our heads and went 'Oh, ok', and that was it, 'next please' sort of thing and we just went back to school'. 'My parents weren't told, it had come out of the blue. I left it until I left college and then I told them.' The documentary follows Adrian, Gary, and two other pupils, Richard Warwick and Steve Nicholls, on their fight for justice in the lead up to the final report of the public inquiry. They recall how, in the late 1970s, an NHS haemophilia unit was opened at their college, which meant they and their friends could receive an injectable treatment – Factor VIII – on site, which was branded as revolutionary. The pupils and their parents thought Factor Concentrates were a miracle cure, but they later discovered they were a 'death sentence' for many and led to the co-infection of around 1,250 haemophiliacs nationwide with HIV and Hepatitis C, and another 2,400 to 5,000 people developing Hepatitis C on its own, ITV reported. Steve said: 'I feel like we were groomed to conform, we were given all these fantastic opportunities, that's what we'd focus on. 'We'd love to play for six or eight hours a day, go sailing, go fishing, come back and hold our arm out for half an hour to have an injection, it was a trade-off and it was the norm most days. We're not talking have an injection every fortnight, it was most days.' Gary added 'If you did miss it [the medication], sick bay would then report it to your housemaster and you got punished.' Inquiry chair Sir Brian Langstaff's report found that from 1977, medical research was carried out at Treloar's 'to an extent which appears unparalleled elsewhere' and that children were treated unnecessarily with concentrates, particularly commercial ones rather than alternative safer treatments. He said: 'The pupils were often regarded as objects for research, rather than first and foremost as children whose treatment should be firmly focused on their individual best interests alone. This was unethical and wrong.' His report found there is 'no doubt' that the healthcare professionals at Treloar's were aware of the risks of virus transmission through blood and blood products. He wrote: 'Not only was it a pre-requisite for research, a fundamental aspect of Treloar's, but knowledge of the risks is displayed in what the clinicians there wrote at the time. WHAT IS HAEMOPHILIA? Haemophilia is a rare condition that affects the blood's ability to clot. It's usually inherited, and most people who have it are male. Normally, when you cut yourself, substances in the blood known as clotting factors combine with blood cells called platelets to make the blood sticky. This makes the bleeding stop eventually. People with haemophilia don't have as many clotting factors as there should be in the blood. This means they bleed for longer than usual. There are several different types of haemophilia. The following two are the most common: Haemophilia A (Classic Haemophilia), caused by a lack or decrease of clotting factor VIII. Haemophilia B (Christmas Disease), caused by a lack or decrease of clotting factor IX. There's no cure for haemophilia, but treatment usually allows a person with the condition to enjoy a good quality of life. Genetically engineered clotting factor medicines are used to prevent and treat prolonged bleeding. These medicines are given as an injection. Haemophilia occurs in about one of every 5,000 male births, according to the CDC. Currently, about 20,000 people in the US and 400,000 worldwide are living with the disorder. In the UK, figures suggest there are 2,000 sufferers of the condition. Source - NHS 'Practise at Treloar's shows that the clinical staff were well aware that their heavy use of commercial concentrate risked causing Aids,' he continued. Despite knowledge of the dangers, clinicians proceeded with higher-risk treatments in attempts to further their research, the report concluded. Sir Brian wrote: 'It is difficult to avoid a conclusion that the advancement of research was favoured above the immediate best interest of the patient.' He continued: 'In conclusion, the likeliest reason for the Treloar's treatments having the catastrophic results they did is that clinicians were seduced by wishing to believe, against available information, that intensive therapy might produce better overall results; by the desirability of convenience in administration rather than the safety of treatment and by ignoring some of the treatment implications of the research projects they wished to pursue.' The Lord Mayor Treloar College, which has since been rebranded as Treloar's, was established in 1908 as a school which gave disabled children a better chance to receive an education alongside any medical treatment they might need. It was originally a boys' school but then merged with a girls' school in 1978 to become co-educational. From 1956, boys with haemophilia began attending the school. After it was discovered pupils had been given infected blood plasma, the NHS clinic at the school closed. The report also highlighted that parents and children at Treloar's were given little information about their care and the related risks, and that parental consent was not sought regarding the use of different treatments. Sir Brian wrote: 'The evidence before the inquiry suggests, overwhelmingly, that there was no general system or process for telling parents of the risks of viral infection. Nor were pupils told. 'Parents were not given details, nor even core information, about their children at Treloar's for haemophilia. 'They were not told, for instance, that despite their home clinician's recommendations as to the treatment product, the pupils were being given a range of different concentrates.' In many cases, the report stated, research was conducted on patients, including children, without consent or consent of their parents and without informing them of the risks. 'They gave a consistent account that there had been no meaningful consultation with their parents, or with them,' Sir Brian continued. Treloar's told ITV: 'We sincerely apologise to our former students and their families who were so devastatingly infected and affected by the infected blood scandal. The treatment by clinicians of pupils at Treloar's in the 1970s and 1980s was unethical and wrong.' The British Blood Scandal: Poisoned at School is available to watch on ITV1 on Tuesday at 9pm and ITVX.
Daily Mail
20-05-2025
- Health
- Daily Mail
The British Blood Scandal: Poisoned At School: Trailer, certificate and where to watch
Victims of the Contaminated Blood Scandal, who all had haemophilia, share their stories, their anger, loss and frustration Year: 2025
The Sun
19-05-2025
- Health
- The Sun
I was given HIV through infected blood at school…most of my classmates died & my wife was forced to abort our only child
IT is a modern day horror story. Disabled children as young as nine were sent to a groundbreaking boarding school with the promise of a normal childhood and facilities beyond their wildest dreams. 16 16 Instead, they had been lured there to be experimented on - human guinea pigs to test a range of new treatments. Now 80 of the 122 pupils who went to the revolutionary school are dead. This is not a dystopian Hollywood movie but leafy Hampshire in the Seventies and Eighties. Earlier this month the public inquiry into the infected blood scandal reconvened to find out why the Government compensation has been so slow to get to the victims. More than 30,000 people in the UK were given contaminated blood products between the 1970s and early 1990s, the inquiry previously concluded. Victim Richard Warwick, 59, has been to more than 20 of his school friends' funerals. He recites all their names, he remembers them all. Two brothers stand out as he says them calmly one after another. Each name is a family tragedy that could have been prevented, yet instead were deliberately inflicted. He told The Sun: 'We were human guinea pigs. We were nothing to them. 'We were used for experimental research. Children. Nine-year-olds used for experimentation with no consideration for their health. 'We were commodities to be used for research.' Richard, from Scarborough, North Yorks, spent the first three years of his life in and out of hospital before he was finally diagnosed as a haemophiliac. The condition is a rare, inherited bleeding disorder where blood doesn't clot, leading to prolonged bleeding after injuries. He said: 'I spent about 70 per cent of my childhood in hospital, not school, trying to get better from bleeds. 'All my childhood was on the sofa watching other kids play outside because it was too dangerous for me to go out. 'I couldn't kick a ball or I would end up in hospital again.' False hope Out of the blue his parents received a brochure for Lord Mayor Treloar College, a groundbreaking boarding school in Alton, Hampshire, for disabled children. It offered a first class education with on-site treatment for his haemophilia so he wouldn't miss a day of school. 16 16 For Richard and his parents it was an offer they could not refuse. He said: 'After a lot of tears and heartache my parents decided to send me down there when I was ten years old. 'It was an amazing place. To me it was like something out of Harry Potter. 'There was an amazing Elizabethan mansion, fish ponds and gardens. There were play areas and a football pitch for us, along with sailing, rowing, archery, shooting... the list was endless. 'From nothing, from being desperate to play outside with my friends, I had all these things. It was overwhelming.' After a few years of bliss, pupils with haemophilia started being taken into the hospital wing for a new miracle drug. Richard said: 'They would give you a treatment every day, or every other day, whether or not you needed it.' In Britain, blood donation was tightly regulated. But in America donors were paid for their blood and it was an easy way to make money for those desperately in need - especially drug addicts after their latest hit. Just one donor infected with hepatitis or HIV could infect a whole batch of the unscreened plasma, known as Factor VIII. Richard said: 'My parents received a letter in the post around 1978 asking if they would like their child to be involved in this trial, and my father ticked the box that said no. 'They went ahead with it anyway. 'We now know the whole reason those young boys were at that school was because it was a research project. 'Nothing to do with education, nothing to do with treatment. It was all to do with research into viruses. 'They were using a product known to be dangerous and treating children unnecessarily.' 16 16 Pupils poisoned Pupils were given different batches of the drug known as Factor VIII and then tested for days afterwards to see their bodies' reaction. The effects were plain to see for all concerned. But instead of stopping, they segregated the pupils, knowing they might be infected with hepatitis, yet the drug treatment carried on anyway. Richard said: 'We had kids walking around totally yellow, their eyes yellow. 'Boys were taken into sickbay for several days, bright yellow with jaundice. 'You could tell their system, their livers, were being damaged by Factor VIII. 'As we got older we knew something wasn't right.' 16 16 16 Pupils were punished if they didn't accept their treatment or their daily blood tests. First came a warning, then came black marks and detention. Richard left school at 16 and soon started falling ill. By the age of 21 he was told he had HIV, a diagnosis kept from him for nearly four years. He had also contracted Hepatitis B and C from the Factor VIII he was given. He said: 'I was groggy all the time, night fever, sweats, extremely tired all the time. I weighed just eight stone. 'For three-and-a-half years they didn't tell me I had HIV. They felt they couldn't give patients they had known for decades a diagnosis that could see them dead in two years.' Victims unite He remembers the slow walk back to the home he shared with girlfriend Tina, now his wife, to tell her. In a devastating double blow, weeks later Tina, now 66, discovered she was pregnant, and her doctor told her she had to have a termination because of the risk of HIV to the child. He said: 'We just held each other and cried when I told her I had HIV. 'Then Tina found she was pregnant. 'Do we bring a child into the world who could be HIV positive and die in two years? Or do we bring a child into the world who is going to lose their father in two years? 'At the time it was a no brainer. 'That was the last chance we had to have a family.' 16 16 16 The birth of the internet allowed the victims of Treloars to connect with each other, and they found they were far from alone. The scandal reached far from Treloars into every corner of Britain. The Infected Blood Inquiry heard how NHS patients including haemophiliacs, women in childbirth and surgical patients were given blood from high-risk donors such as prisoners and drug addicts. In May last year the six year inquiry delivered its devastating report saying it was 'the worst treatment disaster in the history of the NHS'. The Treloars victims thought they would be just a few paragraphs in the lengthy judgement. But they were surprised when Sir Brian devoted a whole chapter to their case. It confirmed that children at the school had been used as 'objects of research' while the risks of contracting hepatitis and HIV were ignored. Yet 12 months after the report, compensation payments to victims has barely begun. NHS blood scandal: The report's key findings IN a damning seven-volume report, Chair of the Infected Blood Inquiry Sir Brian Langstaff concluded that MPs, doctors and the NHS conducted a "chilling cover-up. Key failures highlighted in the report include: A failure to act over risks linked to contaminated blood – some of which were known before the NHS was established in 1948. The slowness of the response to the scandal; for instance, it was apparent by mid-1982 that there was a risk that the cause of Aids could be transmitted by blood and blood products but the government failed to take steps to reduce that risk. Tests on blood were not introduced as quickly as they could have been. Patients and the wider public were given false reassurances. There were delays informing people about their infections – sometimes for years – and they were told in 'insensitive' and 'inappropriate' ways. Patients were 'cruelly' told repeatedly that they had received the best treatment available. People with bleeding disorders were treated without proper consent and research was carried out on them without their knowledge. Regulatory failures, including the licensing of dangerous products, and failure to remove them from the market when concerns were raised. Instead of ensuring a sufficient supply of UK-made treatments for haemophilia, the NHS continued to import the blood clotting blood plasma treatment Factor VIII from the US – where manufacturers paid high-risk donors, including prison inmates and drug users. The UK blood services continued to collect blood donations from prisons until 1984. In terms of blood transfusions, blood donors were not screened properly and there were delays in blood screening. Too many transfusions were given when they were not necessarily needed. Richard was going to give his evidence to the inquiry anonymously. But on the eve of his appearance he had a change of heart. He said: 'It was the most cathartic thing I have ever done. From being a dirty little secret for decades, suddenly it was all out in the open. 'Talking to this huge room of people for more than two hours felt just incredible. It felt like a weight had lifted from both our shoulders. To finally talk about it all, including losing our child. 'My mum and dad and Tina's didn't know about that and they saw it live on YouTube. 'It was a shock but it had to be done, it had be told.' Lifetime burden Richard, who appears in new ITV documentary The British Blood Scandal: Poisoned at School, which airs on Tuesday, is awaiting his payment so he can move house to a place where he can install a hydro-pool to help with his therapy. Every day without a cheque means that dream is further and further away. As of April 24, 475 people have been invited to start their claim and 77 payments have been made, totalling more than £78m out of an £11.8 billion pot. 16 16 Richard said: 'The rollout has been terrible. It should have started two years ago. 'They are playing the long game. The more people that die the less they have to pay out. They are working as slowly as they can. 'My dream is a place with a hydro-pool so I can do my exercises. I am having problems with my joints, my knees and ankles. 'I get internal bleeding in my ankles and my knees which is very painful. I am on a heavy regiment of painkillers. 'My bones are thinning because of the HIV meds, they turn your bones into chalk. 'We just want to not have any money worries any more and carry on with the rest of our lives.' Sir Brian Langstaff, who chaired the inquiry, made the rare step to reconvene earlier this month to ask why the compensation payment scheme was too slow in reaching victims. Victims told the inquiry that time was not on their side as people died while waiting for compensation. He grilled Paymaster General Nick Thomas-Symonds, who told the Commons last week that more than £96million had been paid out so far. Mr Thomas-Symonds told MPs: 'I recognise that for many in the community, the Government's actions are coming after decades have passed, and there's nothing that can put right the damage that inaction by multiple previous governments has done, and it's not my intention for this statement to diminish that. 'The UK and devolved governments have accepted the inquiry's recommendations in full or in principle and implementation is under way across Government, arms-length bodies and healthcare settings.' A spokesman for Treloars School said: 'We sincerely apologise to our former students and their families who were so devastatingly infected and affected by the infected blood scandal. 'The treatment by clinicians of pupils at Treloar's in the 1970s and 1980s was unethical and wrong. 'The Inquiry's report lays bare the full extent of this horrifying national scandal. 'We are deeply saddened that some of our former pupils were so tragically infected and their families affected, and we expect the Government to implement its compensation plans without further delay.'
