OF the 500 members of the Irish Haemophilia Society, 210 have been infected with the hepatitis C virus from BTSB blood products. "There have been three deaths to date," Ms Rosemary Daly, IHS administrator said yesterday.
She was speaking at the tribunal of inquiry into the hepatitis C scandal. "This community [the Haemophilia Society] has been devastated," she said. "It is so small that they all know each other. You can see it particularly at funerals - people wondering who's next."
Of the 103 members infected with the HIV virus from contaminated blood products in this State, 57 had died, she said.
Haemophilia, she said, was passed from mother to son. There was a 50 per cent chance that such a woman would pass on the condition to her sons, and the daughters of such sons would also be carriers. Frequently, the brothers of such women would also have the condition.
Before 1970, the average life expectancy for a haemophiliac was 42. This rose to 60, with the introduction of the Factor 8 blood product in the late 1970s and early 1980s. Since discovery of the HIV and hepatitis C viruses, it had dropped again to 42.
On the condition of those before 1970, she said: "People bled a lot. They suffered a lot and had to stay in bed for weeks at a time."
Most of the bleeding tended to be internal, and "they suffer terribly from arthritis, with frequent bleeding in the joints which can cause great pain".
Originally haemophiliacs were treated with whole blood, then frozen fresh plasma, and more recently with the Factor 8 blood product (which assists clotting). Factor 8 could be administered by intravenous injection at home, and this revolutionised the quality of life for haemophiliacs and their families.
For children, it was generally administered by mothers, many of whom now bore a burden of guilt, blaming themselves for the HIV and/or hepatitis viruses their sons had contracted, as well as for passing on the condition itself.
Ms Daly spoke of the "co-infection" phenomenon associated with haemophiliacs, where they were affected by more than one virus, which in turn affected how they could be treated. For instance those with both HIV and hepatitis C could not be treated with the usual hepatitis C drugs as it would compromise their immune system. Further, even among those who are not HIV positive it had been found that the Interferon treatment for hepatitis C had not been successful. It has worked "for only one person to date", she said.
Liver biopsies, necessary to establish the extent of liver disease, were regarded as life-threatening for haemophiliacs and were rarely carried out. Some hospitals refused to perform them on such patients at all.
Ms Daly also told the tribunal about the psychological effects of the hepatitis C virus on haemophiliacs. Having come through and coped with "the HIV trauma", they suddenly found themselves at square one again, facing another virus.
It was "impossible" to get a mortgage, mortgage protection, or life insurance, she said. In addition, there was the question of when to tell a prospective partner. At work there was a tendency to conceal the condition for fear of losing the job. With teenagers there was a problem with overcoming a despairing attitude.
The main issue for haemophiliacs with the virus was concealment, she said. "They are absolutely terrified of being found out." Even within families the awareness was internalised, "with everyone hiding it from everyone else" resulting in a build-up of tension, and depression.
Ms Daly said her society's major concern was that procedures for the recall of infected blood/blood product be adhered to stringently, and that the society be informed when there was a recall. "We are absolutely convinced there are other viruses there, not yet identified," she said.
Her main hope for the tribunal of inquiry was "that lessons are learned from the mistakes of the past" as "our members are dependent on blood products for their very existence", she told the tribunal.
