INTRODUCTION
Positive Action is a company limited by guarantee formed in 1994 primarily as a support group for women who were infected with Hepatitis C through the administration of contaminated Anti D Human Immunogloblin. The Group is managed by its Board of eight voluntary members and has numerous sub-committees. It also has a national delegate structure. Positive Action is funded by the Department of Health and Children and provides a range of supports to members including telephone support, referral to legal, medical, counselling and other relevant resources.
HISTORY
Anti D Human Immunogloblin is a blood product, which was manufactured by the BTSB (Blood Transfusion Service Board)from 1970 - 1994. It is administered to Rhesus Negative (blood type) Mothers who give birth to Rhesus Positive babies, to prevent Haemolytic disease in the foetus of future pregnancies.
In February 1994 the BTSB announced that Anti-D distributed in 1977 may have been infected with Hepatitis C and invited the 1977 recipients of Anti-D to come forward for testing. That invitation was later extended to all recipients of Anti-D. Approximately 70,000 women were tested. Over 1,200 tested positive to Hepatitis C antibodies of which approximately 50% tested positive to active virus. There are also a number of women who have been informed by the BTSB that they received a contaminated batch of Anti-D but who are testing negative to Hepatitis C Anti-bodies or Virus. Some of these women have a documented history of bad health and although testing negative are clinically diagnosed as suffering from post viral syndrome.
Having tested positive, Jane O'Brien requested the BTSB to put her in contact with other women in the same situation. This request was refused. However, through media and by word of mouth a meeting was set up in the Council for the Status for Women Office, which was attended by approximately 30 women. A committee was formed at that meeting. Having decided the only negative thing about these women was their blood, Positive Action was the name agreed for the group. Positive Action's initial supporters included The Council for the Status of Women, Rosemary Daly of the Irish Haemophilia Society. Theresa Ahern TD(RIP) Chair of the Oireachteas Women's Rights Committee, Maire Geoghan Quinn TD and President Mary Robinson.
We met the Minister for Health Brendan Howlin TD, who established an Expert Group Committee to investigate the contamination, under the leadership of Dr. Miriam Hederman O'Brien.
As Hepatitis C was only identified in 1989 very little was known about the disease, however Dr. Geoff Dusheiko of the Royal Free Hospital in London was of great assistance to our group on medical matters.
Hepatology Units were set up in Beaumont, The Mater, St. James' and St.Vincent's Hospitals in Dublin, Cork and Galway University Hospitals and later in St. Luke's Hospital Kilkenny and The Children's Hospital in Crumlin, where those infected were referred for medical supervision.
Counselling was organised by the BTSB, but when Positive Action informed the Minister that those who infected us could not counsel us, he agreed to private counselling.
The problems associated with the disease-included stigma, confusion between HCV and HIV. Dentists refusing to treat those infected. Jobs were at risk (particularly those in the medical sector) and Insurance Companies refused Life and or Mortgage Protection cover, and Travel Insurance.
In January 1995 the BTSB finally agreed to inform all infected women of their entitlements and of the support group Positive Action.
Positive Action realised that as our membership were Rhesus Negative and many were Blood Donors, their blood had been in high demand over the previous 17 years, during which time they were infected unknowingly with Hepatitis C. Positive Action was instrumental in the BTSB setting up a Look Back Programme to trace donations. Blood transfuses were diagnosed with Hepatitis C and Transfusion Positive was founded as the support group for Men, Women & Children infected with Hepatitis C through Blood and/or Blood Products. It was also discovered that members of the Haemophilia Society and members of The Irish Kidney Association who were on dialysis had also been infected by blood or blood products.
In March 1995, the Minister for Health, Michael Noonan TD, released the Expert Group's Report. This report acknowledged further infections during 1990 - 1994, which had previously been denied by the BTSB. It found that there was infection during every year that Anti-D was used - i.e., 1970 - 1994. It was also found that the BTSB were aware that Patient X was infected with Environmental Jaundice and continued to use her infected plasma in the manufacture of Anti-D. (A Court Case later revealed that the BTSB was aware in 1976 that patient X had infectious Hepatitis not Environmental Jaundice).
On the publication of this report Positive Action entered into negotiations with the Department of Health for appropriate compensation (medical and financial). Negotiations ceased in September 1995 and resumed on the 1st November 1995 at the request of the Department of Health.
As a result the following were introduced:-
A Health Care Package
The Health (Amendment) Act 1996, which includes Hospital Services, GP visits, Drugs and Medicines, Medical and Surgical appliances, Optical, Aural and Dental services, Home Nursing, Home Support and Counselling.
An Ad Hoc Compensation Tribunal.
Positive Action never accepted an Ad Hoc Compensation Tribunal however, There were no further concessions by the Minister for Health, Michael Noonan. The Secretary of the Department of Health referred to it as a Benevolent Institution. The Ad Hoc Compensation Tribunal was rejected by 91% of our membership at a General Meeting in December 1995.
Closing date for application to the Compensation Tribunal was the 17th June 1996 and a Dail debate to extend the date was defeated. On Legal advice, our membership took a twin track approach and applied to the tribunal under protest but also issued writs.
Following publication of the Expert Group Report we acquired information that caused doubts and we campaigned for a Tribunal of Inquiry to be set up to fully investigate the contamination. One of our members Brigid McCole from Donegal was pursuing a High Court case at that time because she wanted "the truth". Sadly, she died on 2nd October 1996 without getting the truth. Minister Noonan's speech to the Dail asked whether her legal team could have chosen a better candidate as a test case. Positive Action members walked out in protest and asked for an Apology or the Minister's resignation.
An apology was received and a Tribunal of Inquiry was set up.
Under Judge Thomas Finlay, this Tribunal commenced on 5th November 1996 and published its report in March 1997. Amongst its findings were:
- Plasma used in the manufacture of Anti-D was in breach of the BTSB's and Transfusion
- Medicine's standards.
- Medical staff at the BTSB failed to respond to reports that recipients of Anti-D had suffered jaundice and/or hepatitis.
- The BTSB acted unethically in obtaining and using plasma from Patient X without her consent.
- The NDAB was deficient in carrying out its functions.
- They also failed to report to the NDAB and to The Board of the BTSB. Responsibility for these failures rests to a major extent with 3 named employees of The BTSB - Jack O'Riordan, Terry Walsh and Cecily Cunningham.
The report made recommendations, which included re-structuring the BTSB and moving from Pelican House. The BTSB is now known as the IBTS (Irish Blood Transfusion Service) and its premises are located in St. James' Hospital.
Following the Tribunal findings Positive Action reiterated the necessity for a Statutory Compensation Tribunal with power to award Exemplary and Punitative damages. This was granted in May 1997 with a Reparation Fund of 20% of the Tribunal Award for Exemplary and Punitative damages or the option of a hearing on these damages.
As a result of the findings on the number of contaminated batches of Anti-D issued in 1977-1979 and 1991-1994 Positive Action were instrumental in the BTSB's policy of notifying all those who received a contaminated batch, as this may have impacted on their health. When notifying those who received contaminated Anti-D the BTSB gave our number as a support group and we now have a number of members who who have been informed by the BTSB that they received a contaminated batch of Anti-D but who are testing negative to Hepatitis C Anti-bodies or Virus. Some of these women have a documented history of bad health and although testing negative are suffering from post viral syndrome.
In June 1997 the Minister for Health Mr Brian Cowen, TD released the McCole papers. These revealed that the BTSB had information since 3rd April 1995 that they were negligent, had no defence in the McCole case, but continued to fight her application for anonymity and sent her a threatening letter on her death bed.
The government sent the Finlay Report to the DPP who responded on the 6th October 1997 and ruled that no criminal prosecutions would be forthcoming as a result of the report. A complaint was filed with the Gardai and an investigation commenced in November 1997. This resulted in two ex-employees of the BTSB - Dr. Terry Walsh and Ms Cecily Cunningham (Dr. Jack O'Riordan had since died) - being arrested and charged with seven counts of Grievous Bodily Harm. Dr. Terry Walsh has since died and the case against Ms Cecily Cunningham was dropped by the DPP due to deaths of crucial witness'. |
