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tv   Business Today - NYSE Opening Bell  BBC News  May 20, 2024 2:30pm-2:46pm BST

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�* reasons. one was the idea number of reasons. one was the idea that the risk of aids was out balanced by the benefits of using the products because it was said in the products because it was said in the case of haemophilia it was life—saving. that ignored both the fact that most treatments for people with haemophilia were not used in life—threatening situations and the fact that there were tried and trusted life—saving alternatives. in particular, much less risky cryoprecipitate, each unit of which was produced from a single donation by a british voluntary donor. another reason it was a bad decision was the conclusion it wasn't feasible to replace concentrates with cryoprecipitate on grounds of supply. yet transfusion directors told the inquiry that if asked, they could have made more of the
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cryoprecipitate treatment for people with bleeding disorders. they weren't asked. some clinicians explained how they would have adapted their treatment practices if fewer american products had been available and this is not the benefit of hindsight. on either side of the pennines, alder hey and sheffield children's hospital is treated children with bleeding disorders at the height of the aids crisis. alder hey treated its children almost exclusively with large full commercial concentrates. utterly inappropriate. almost all of the children were infected with aids. by contrast, at sheffield, professor sought to minimise exposure to multiple donors by using cryoprecipitate. there was one infection with hiv at sheffield children's hospital. it is still one
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too many but it is illustrative of the fact that the adoption of different treatment practices by haemophilia clinicians could have substantially reduced the number of infections. treatment choices mattered. take the case of the haemophilia centre at treloar school. of the 122 pupils with haemophilia that attended the school between 1970 and 1987, only 30 survived. 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. there was a particularly heavy use of factor concentrates. different concentrates were indiscriminately used, increasing risk. pupils were given
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extra to see how prophylaxis might work. research prejudiced the quality of treatment and convenience of administration trumped safety. children were treated in this way without their parents having been provided with any or anywhere near enough information about the risks of treatment. it was unconscionable to treat children with concentrates capable of transmitting serious viruses without explaining those risks clearly to their parents. there were multiple research projects where informed consent for participation was neither sought nor given. that was unethical, it was wrong. there are some echoes of what happened in treloar�*s, the evidence relating to the haemophilia centres across the uk, which is extensively
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examined in this report. all the evidence points to a single inescapable conclusion, that children and adults were not treated in a way which prioritised their safety above other considerations. just as treatment choices by doctors mattered, so, too, did giving patients or their parents the information to make an informed decision about their treatment with blood or blood products so they knew what to be alert for if they were infected. very early on in the inquiry, it became clear that most people went and told enough about the risks of treatment with blood or blood products to give informed consent, if indeed they were told anything. norwere consent, if indeed they were told anything. nor were they given information about alternative treatments and yet, respecting pupils' right to control what happens their own body has always been an ethical cornerstone of medicine. always. a booklet produced
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by the medical defence union in around 1953 explained that consent had to be genuine consent, a real expressed willingness by the patient to undergo the treatment after its nature, its risks and its objective had been clearly explained. in 1980, the british medical association's handbook on medical ethics said, consent is freely given if the patient understands the nature and consequences of what is proposed. the next year, they added, doctors offer advice but it is the patient who decides whether or not to accept the advice. the failure of clinicians to tell people of the risks of infection from blood or blood products, the failure to tell people of the availability of alternative treatments, the failure
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to tell them they were being tested for hiv or hepatitis c and sometimes the failure even to tell them or to tell them promptly that they had been infected with hiv or hepatitis by their treatment. the failure to explain these devastating diagnoses privately, in person and with sensitivity. these failures were widespread. they were wrong. they were unethical. the failures and decision—making that led to the original infections were then compounded by institutional defensiveness and that is a pattern of institutional defensiveness that must stop. when citizens have concerns that something has gone seriously wrong, fairness should mean that they get
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answers. people infected with blood and blood products did not. instead, their trauma has been compounded by their trauma has been compounded by the lack of recognition of what happened to them and by a lack of accountability. the report details how three lines were repeatedly deployed by successive governments. but people had the best available treatment, that the infections were inadvertent, and that screening for hepatitis c could not have been introduced earlier than september 1991. all of those claims were untrue. applause that list i gave you earlier of the
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23 countries that introduced screening before the uk did was compiled by a screening before the uk did was compiled bya high screening before the uk did was compiled by a high courtjudge in a landmark case in 2001. he found that screening should have been introduced earlier. yet, the government continued to assert that screening began as soon as the technology was available. even after campaigners pointed out that that was wrong and contrary to what the judge had found. much of the responsibility for this institutional defensiveness lies with the civil service. it wasn't until 2003 that limited financial support was announced four people infected with high titres see through nhs treatment with blood and blood products —— infected with hepatitis c. the line taken by successive governments was that no financial support whatsoever should be provided. on each occasion in the
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19905, be provided. on each occasion in the 1990s, when a minister having heard the pleas for help by people affected and infected, expressed an interest in changing that line, they were persuaded against it by civil servants. one minute could have come from, yes, minister. it is quite clear that he, that is the minister, is trying to change the line little by little. he has had plenty of briefing written and oral on the subject but his sympathy for those concerned is clearly uppermost in his mind. laughter when later in the early 2000 a minister did seek an investigation to see if the advice given to her predecessors about the failure to achieve self—sufficiency was correct, because she doubted, what has been told to her by her civil
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servants, the resulting report wasn't published for nearly four years. by then, it had been substantially changed from the initial draft which had, as the minister had asked, set out a factual account of what available documents had said. it had now become which with out any input from the original author, expressed opinions favouring the lines the government had been taking and provided an incomplete and thus misleading picture. the report is then published the so—called self—sufficiency chronology was an insult to campaigners. despite the challenges of ill—health and grief, they had determinedly pieced together a much fuller understanding of what had happened than the department of health. to cap it all, it was repeatedly asserted as a
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reason for not paying infected people similar sums to those paid in ireland that in ireland, the sums paid were because the government they accepted there had been a fault. whereas in the uk, the government had not. yet again, it fell to a campaign to challenge this and he succeeded. a high courtjudge decided that the government's position was an error. the irish government did not set up a compensation scheme because it accepted there had been fault, yet civil service briefings to ministers simply ignored this and repeated the original approach. simply ignored this and repeated the originalapproach. documents simply ignored this and repeated the original approach. documents which might have been fault to assist those seeking compensation went missing. i devoted a whole chapter in the report to that. in the case of some documents, it is simply not possible now to know how and why they went missing. for others, i
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have concluded that they were deliberately and wrongly destroyed in an attempt to make the truth more difficult to reveal. applause well, let me turn from what happened and how successive governments responded to the third element of the inquiry�*s report, the future. at the inquiry�*s report, the future. at the start of the inquiry, people told me they wanted to ensure that a disaster like this never happened again. the report begins to address that by setting out a number of lessons to be learned. the first and most important lesson to be learned is that patient safety must be the guiding principle. many, indeed
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most, infections would have been prevented if patient safety had been paramount throughout. the second lesson to be learned concerns risk. risk is poorly understood and poorly communicated and the wrong questions were asked and answered. the line that there was no conclusive proof that there was no conclusive proof that aids had been transmitted by blood and blood products may have been strictly true at the time but it was misleading and it misled. it gave false comfort to patients and clinicians that the risks were not as real as indeed they were. the public should be trusted with the truth. with all its uncertainties. professor arthur bloom, to return to him in this context, was warned in a letter from the him in this context, was warned in a letterfrom the us him in this context, was warned in a letter from the us centre for disease control in march 1983 that aids was an epidemic evolving with a frightening pace. and that blood
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products could transmit its cause. he failed to share that letter or the information within it. instead, some clinicians advised that the small number of cases meant that it wasn't a big risk for the uk haemophilia population. now, that confused incidence and risk. in a disease with an incubation period of some two years, the cases you diagnose on day one only tell you who was infected two years ago. not who was infected two years ago. not who is infected today but has not yet been diagnosed. the day cases showing today are just the tip of the iceberg. in their slow and protracted decision—making, civil servants and ministers lost sight of the value of taking steps to reduce
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risk even if full elimination wasn't yet possible. infections could have been prevented and lives could have been prevented and lives could have been saved even ifjust some of the measures examined in the report had been implemented. and if patient safety was the guiding principle, there should have been curiosity before 2017 about what led over 3000 people died and thousands more to live with infections. apart from lessons which should be learnt, what else should happen next miss well, i fully expect the government to make an apology. applause to be meaningful, though, that apology must explain what the apology must explain what the apology for.
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