The mother of a child who was infected with HIV through a Pelican House blood product and has since died of AIDS said yesterday she believed her son had been murdered.
The woman, giving evidence under the pseudonym Amanda, said products which had been heat-treated to guard against HIV were available but not used on her son.
"I believe my son was murdered and I would like his case to be handed over for investigation," she told Judge Alison Lindsay.
Her son Mark (also a pseudonym) was infected with HIV through non-heat-treated Blood Transfusion Service Board factor 9. The boy tested positive in August 1986 and died in 1995, aged 17.
She said she was never told that blood products carried a risk of viral infection. The first time she became aware of a risk was in late 1984 when she was sitting with Mark in a waiting room in Harcourt Street Hospital and she saw someone reading a newspaper which said a haemophiliac in Dublin had died of AIDS.
She said her brother, a haemophiliac with factor 9 deficiency, like Mark, went to discuss the matter with Prof Ian Temperley, the former medical director of the National Haemophilia Treatment Centre, and he "reassured him that factor 9s would in no way contact HIV".
Asked what was the rationale given for this assertion, Amanda replied: "I understood we were on different treatments."
Her brother subsequently tested positive for the virus, which was "absolutely devastating" given they were told they would escape.
She said Mark subsequently fell ill and her GP instantly sent him into Harcourt Street to demand he be tested for the virus. Some time later, the family received a letter requesting they attend a clinic.
Amanda said she recalled a doctor telling her that her son was HIV-positive and had an AIDS-related complex.
"I knew I was crying but there was nothing coming out of my mouth, and the doctor got on to me and told me that there was to be none of that carry-on," she said.
Describing the experience of nursing her son through nine years of illness, Amanda said, "It was inhuman. I look back on it now and I don't know how we survived it."
She recalled her son's will to live, which earned him the name "Lazarus" in Harcourt Street. "My God the suffering, the suffering he did, from one major thing to another, and he never ever gave up. He kept fighting and fighting."
Her son was a skilful footballer, highly intelligent and loved by people in his community, she said, adding: "It should not have happened . . . heat treatment, everything was in."
Regarding her account of her brother's meeting with Prof Temperley, the doctor's counsel, Mr Brian McGovern SC, said his client's recollection was that, while he would have said the prospects were more promising for people with factor 9 deficiency, he doubted he would have said there was no chance of infection.
Mr McGovern added that neither Prof Temperley nor the two other doctors whom he represented was the doctor who spoke to Amanda in the manner she described when she was informed of her son's HIV status.
Earlier, a haemophiliac infected with hepatitis C, told the tribunal he saw a file which showed he had tested positive for the virus years before he was informed.
Using the pseudonym Jack, he said he was told by a junior doctor in 1995 that he had the virus. The doctor "seemed embarrassed by it" and left the room with Jack's patient records behind. Jack said he looked at the file and it showed he had tested positive in 1992, 1994 and 1995. "I presume he left it there for me to see," said Jack.
He said he too had been told that haemophiliacs with factor 9 deficiency, like himself, would not get HIV. It was not until the tribunal started that he discovered factor 9 patients got the virus and this came as an "awful shock".
He said he could recall tensions in the 1980s between the Irish Haemophilia Society and Prof Temperley. However, he said, to him the doctor was "a decent man" who "might not have been open to suggestions but he changed my quality of life".
Also giving evidence yesterday was Terence (also a pseudonym), the father of a severe haemophiliac with factor 8 deficiency, who was infected with hepatitis C.
His said his son first received treatment in 1986, and they were informed "in passing" five to six years later of his hepatitis status.
Terence said that around 1993-1994 he became involved in a dispute with the Eastern Health Board over the sudden termination of prophylaxis treatment for his son, apparently because of its high cost. He said he travelled to Wexford to discuss the matter with the then minister for health, Mr Brendan Howlin, and he informed him he would get the treatment restored.
He said the problem went unresolved for a while, adding: "There was somebody not telling the truth and it was not me and I do not think it was Brendan Howlin."
Counsel for Prof Temperley said his client acknowledged Terence's efforts, as a result of which the doctor was able to secure prophylaxis treatment, which he had been seeking, for about 50 children at considerable cost to the Exchequer.
Terence replied that if that was the case it was nice to know, but it should not have taken him to get prophylaxis for his son or any other haemophiliac.
