Of all the groups who have suffered from the blood contamination scandals, haemophiliacs appear to have fared worst. Of approximately 400 Irish haemophiliacs, some 210 have been infected with Hepatitis C and an estimated 103 with HIV. Moreover, these two diseases have been responsible for all but two of 68 haemophiliac fatalities over the past 15 years.
As well as suffering inordinately, haemophiliac patients have felt marginalised by the State in its examination of the blood scandals, as the focus to date has been largely on the infection of women with Hepatitis C through the use of contaminated batches of the blood product anti-D.
The publication yesterday of terms of reference for their own tribunal of inquiry has gone some way to redressing that imbalance and, in the eyes of the Irish Haemophilia Society, is a vindication of more than two years of lobbying.
The new inquiry has its roots in the Finlay tribunal, established in 1996 by the former minister for health Mr Michael Noonan after the death of Mrs Brigid McCole.
From the outset, the IHS expressed its concern at the tribunal, as it appeared not to address the suffering of haemophiliacs directly. The society pressed for the terms of reference to be broadened, but to no avail. Adding to its frustration were difficulties in being afforded representation at the inquiry.
In the end, the IHS withdrew from the tribunal, and instead sought a new inquiry which would investigate matters specific to haemophiliacs.
The Government agreed in principle to such an inquiry, as well as to reviewing the 1991 "political settlement" for people with haemophilia who had become infected through contaminated blood products. However, it took more than a year to bring forward the terms of reference, and the question of compensation has yet to be revisited.
The chairman of the IHS, Mr Brian O'Mahony, said yesterday that the society was happy to keep the issue of compensation separate from the inquiry. He expected to "begin discussions very shortly" with the Minister for Health on a new settlement.
By consulting closely with the IHS on the new inquiry's terms of reference, the Government has followed a precedent set with the Finlay tribunal, for which the terms of reference were approved by Positive Action, the lobby group representing women contaminated with Hepatitis C.
The new tribunal will look into products provided by the Blood Transfusion Service Board as far back as the early 1980s, as well as at products manufactured by US pharmaceutical firms. During the 1980s, blood was exported from Ireland for processing in the US before being returned here. This process has ceased with the introduction by the BTSB of new technology. It remains to be seen, however, whether the tribunal will be able to compel such US firms to submit evidence. To a large extent, it will be relying on their good will.
Former ministers for health and BTSB officials will be among the witnesses who will be called to give evidence.
