The Irish Haemophilia Society was under severe financial strain in the early 1990s because of the burden of caring for HIV-infected members and pursuing litigation on their behalf, the tribunal heard yesterday.
Ms Rosemary Daly, the society's administrator, said it was "a nightmare" labouring under enormous pressures.
In 1993 the staff were put on protective notice because promised Department of Health grants had not come through. She said it was a "horrific" year for the haemophilia community with 15 deaths from AIDS-related conditions.
In general terms, Ms Daly said, "nothing comes easy" for people with haemophilia. Nothing was achieved, she said, without a struggle.
She described how funding the legal action against parties responsible for infecting haemophiliacs with HIV was an "absolutely enormous" task, with a possible legal bill of £200,000 being talked about.
As individual members could not have afforded the case, the society agreed to take it on. Some £30,000 was raised through loans taken out by members, with other money raised through flag days and coffee mornings. In April 1989 solicitors were engaged whose initial view was optimistic and who thought litigation would take 18 to 24 months.
In October 1990, however, it emerged the target date was not going to be met. Ms Daly said this was a "devastating blow" for people whose life expectancy was threatened. The following month, the IHS decided to change solicitors.
In May 1991 the second firm said it had concerns about handling a case of that size. The society was informed "they were stopping. End of story."
She said "our faith in the legal system in particular was gone". While the action was proceeding the society had been lobbying the then minister, Dr Rory O'Hanlon, for an out-of-court settlement akin to one agreed in December 1990 between the UK government and HIV-infected haemophiliacs in Britain.
Ms Daly said a £7 million offer was made to the society on June 11th, 1991, just an hour before Dr O'Hanlon was due to appear on a Today Tonight television programme on the infection tragedy.
The IHS rejected the offer - which was less than half what it had sought - although its members were "desperate to settle".
A subsequent offer of £8 million was accepted, however, and this compensation brought some relief and dignity to those infected, Ms Daly said.
She said the discovery in 1992-93 that many haemophiliacs had been infected with hepatitis C was devastating news and meant the society was "starting all over again".
She noted that as the IHS was unable to draw down funds for such people from a £1 million Haemophilia HIV Trust, established in 1989 with National Lottery money, it had to rely on its own resources to support them.
While she said it was grateful for any grants from the Department, it had failed to meet the society's costs.
Last year, she said, the IHS spent £90,000 which was not covered by grants. The shortfall was mostly made up by members donating money received from hepatitis C compensation.
Regarding what she described as the "very emotive" issue of the body bag, she said its use by a hospital in March 1993 on a haemophiliac who had died from hepatitis C came as a great shock and caused "immense hurt" to the family. To this day, she said, the issue of whether body bags should be used for HIV and hepatitis C victims had not been sorted out and it remained a matter of major concern to members.
