Almost five years after the hepatitis C controversy broke, more than 13,000 Irish women remain unaware that they received potentially infected anti-D immuno globulin because their records are missing. A further 6,000 women who have tested negative for the virus are to be offered re-testing in the coming weeks.
These 6,000 women, who were already tested under the national screening programme, are to be told by their family doctors that the anti-D they received was, in fact, infected or potentially infected. Their batch cards, which are held by the Blood Transfusion Service Board, show they received anti-D made from plasma taken from the women known as patient X and patient Y.
However, batch cards are not available for another 13,000 women. While the BTSB knows that this number of doses of anti-D were administered in the 1970s and in the early 1990s, they are unable to match them to particular women. Some of these women may have already been tested.
An Expert Group set up by the Minister for Health, Mr Cowen, in late 1997 has been considering how to deal with these issues. The group, made up of doctors, legal experts, BTSB personnel, psychologists and a Positive Action representative, has decided that the 6,000 women who were identified had a right to know.
According to the medical experts advising the group, the risk was minimal and it was not anticipated that a woman's previous negative result would change. However, according to legal advice, as a duty of care a woman has a right to know that she received this particular batch of anti-D.
It is believed that the BTSB had to be persuaded of the need to inform these women. Positive Action, which represents the women infected with anti-D, has been pushing for this for years.
When the 6,000 women were originally tested, as far back as 1994, the board had the information on which batch of the product they had received. However, according to the Expert Group, the board's priority was to try to identify and trace the women who had not yet come forward for testing.
The issue of the other women was "an awkward one which had to be sorted out" and it would have been unfair on the BTSB to expect it to "take it all on board". The BTSB has been aware that over 20,000 batches of infected or potentially infected anti-D were administered but only 1,016 Irish women have tested positive for hepatitis C.
Last year the BTSB cross-matched the women who were identified, from available anti-D record cards and hospital patient records, as having received infected or potentially infected product, and those who had been tested under the screening programme.
As a result of this they identified the 6,000 women who received it, but tested negative. The board knew that an additional 13,000 vials of anti-D were administered, in 1977-78 and 1991-94, but because of a lack of records they have not matched women to a particular dose. In some cases batch cards were missing, women had changed address, or hospitals records did not show which woman received which batch.