British haemophiliacs infected with viruses such as Hepatitis C and HIV from blood products used to treat them will soon hear the results of an inquiry set up to find out what went wrong.
The Government has consistently refused to hold a public inquiry, so the haemophiliac community ran its own, chaired by Lord Archer of Sandwell. This concluded last year, and is due to report its findings within the next few weeks. There have been payments in the past to those affected - which have helped to cover costs arising from their infections. But many are now in financial need, and stress that what they really want is to understand how their infections came about.
In the late 1970s and early 1980s, around 4,800 haemophiliacs were infected with Hepatitis C through their NHS treatment. Approximately 1200 of those were also infected with HIV, two thirds of whom have since died. Targets in the mid-1970s to end imports of blood products and to make the UK self-sufficient in these were not met (watch our report from April 2007).
Jenny Willott, the Liberal Democrat MP, represents a number of haemophiliacs in her Cardiff constituency. Ms Willott has been writing to the Department of Health asking for certain documents to be released to the inquiry. The extraction of documents from Government relating to this issue has been a slow and painful process.
Thousands have made their way to the inquiry team, and into the public domain. But Ms Willott has discovered that 35 are being withheld, many on the grounds of commercial interest. She tells today's Guardian newspaper: "It is appalling that after 20 years, the government is still withholding information... How can the government put private companies' interests, dating back to the 1980s, ahead of the right of the infected and the families of the deceased to know how this dreadful saga was able to happen?
"If the government had backed the independent Archer inquiry, the inquiry team would have had access to all the relevant information. Instead, potentially, crucial information will not be considered by Lord Archer. The Department of Health didn't even send anyone to give evidence to the inquiry."
As for the haemophilia community, they have numerous unanswered questions, and expectations of the inquiry report. Here's a selection, from a brief chat today with Haydn Lewis, who helps to run the TaintedBlood website:
- "After 30 years of infection - which product infected me - commercial or NHS?"
- "We deserve parity with the "compensation" scheme in place in southern Ireland."
- "After 30 years of waiting, the widows and parents of those who have died deserve independent assessment as to whether all this was inadvertent, or not."
Many of those infected have lived longer than was expected, so it will be interesting to see what the inquiry concludes about whether this disaster could have been avoided, and when and how the Government responds - if only to address the fact that many of these families are now struggling to make ends meet.