LAST Tuesday, the victims of the worst treatment disaster in NHS history received news many thought they would never see.
Over 45 years since the first person became infected with HIV, Hepatitis C and other viruses from contaminated NHS blood products, they were told that they would finally get a UK-wide inquiry into what happened to them.
Since this announcement, many people across the country are only just coming to terms with the scale of the disaster – indeed scandal – that took place from the 1970s to the early 1990s.
It infected thousands of people in every part of the UK who were given blood products they thought were safe.
It is estimated that up to 30,000 people contracted Hepatitis C from blood transfusions through the NHS. A smaller number contracted HIV in the same way. Many of these people have never been identified. New victims are still coming forward.
The impact was particularly concentrated in one closely-connected community: people with haemophilia and other bleeding disorders. My constituent, Glenn Wilkinson, who first approached me about the issue in 2010, is part of this community. He caught Hepatitis C after a routine tooth operation.
Most of the blood products they were given to treat them were sourced from profit-making American firms. Whilst the quality of UK-based blood supplies is also an issue, American companies paid people to donate blood. We used voluntary donors.
It was known at least as early as 1970 that US-supplied blood carried a higher risk. It was more likely to come from people desperate for money, including prisoners and drug users, who were more likely to be infected. Yet nothing was done about this for over two decades.
Indeed, it was recently reported that by 1980 the UK Government had even put an estimate on how many haemophiliacs were being infected with what we now know to be Hepatitis C – some 50 people a year.
This also happened in the years when treatment for HIV was less advanced and, after the early tabloid reporting of it, HIV/AIDs was the subject of stigma and ignorance.
By the time something was done, it was too late for thousands of people. By then, virtually the entire community of people with haemophilia at the time – around 5,000 individuals – had been infected with any combination of HIV, Hepatitis C and other viruses.
Today, over 2,400 of them have died as a result. Their families have also been left devastated by loss. Some have been infected by their partners because doctors didn’t tell them of their infections.
Astonishingly, there has never been a national public inquiry into what went wrong. Those infected asked questions, but they fell on deaf ears. Class action lawsuits were staved off with out-of-court settlements, agreed on the condition that people signed forms waiving the right to further legal action.
Neither of the two efforts to investigate this tragedy – one in 2009, the other in 2015 applying only to Scotland – could compel witnesses from Westminster to give evidence. Neither were supported by the UK Government.
Victims have been campaigning for justice for decades, but governments and many politicians failed them. So when I successfully secured my Emergency Commons Debate for Tuesday, after years of campaigning, I expected more of the same. Whatever influenced her, Prime Minister Theresa May deserves credit for her historic announcement.
As momentous as it is, it is only the first step down a long road. We need to ensure that this inquiry finds the answers about what happened. To do this, the Government must make four commitments urgently.
First, this inquiry needs to investigate every aspect of this disaster. The injustice did not stop when people were infected. It continues to the present day. People were tested for viruses without their knowledge, and then never told the results. Medical records appear to have been lost or even falsified, in what Andy Burnham, a former Health Secretary and now the Greater Manchester Mayor, termed a “criminal cover-up on an industrial scale”. Ministerial documents from the time mysteriously vanished.
The financial support victims received has been either insufficient or, for many, non-existent. American firms paid out millions in global out-of-court settlements, but none of this was paid here. All this needs to be investigated. Victims have been forced to beg for help in a sea of bureaucracy and have not even been exempted from recent punitive welfare changes.
Second, the contaminated blood inquiry must have the powers to get to the heart of what happened, ensuring that those involved provide the necessary oral and written evidence. As with Hillsborough, where appropriate criminal charges should then be pursued through the Crown Prosecution Service.
Third, until the inquiry is formally convened, we need clarity on the interim arrangements for storing evidence, as victims are dying virtually every week. People who need help collating and gathering their evidence need access to legal representation.
Finally, and most importantly, as with Hillsborough, we must put families first. They must have an input on its terms of reference, its panel and its chair. They must have a role in the disclosure of information, and have first sight of it themselves. Two recent statutory inquiries – on child abuse and now on Grenfell Tower – have been criticised for not involving communities. No such mistake must happen here.
For decades the suffering of contaminated blood victims has been largely ignored. This week, many who thought they would never see an inquiry can take their first tentative steps down the road to justice.
As we proceed, we should remember the thousands of others who cannot walk this road with us: those who died before they ever knew the true scale of what had happened to them.
Diana Johnson is Labour MP for Hull North and Co-Chair of the All-Party Parliamentary Group on Haemophilia and Contaminated Blood.