The taintedblood Timeline  -  what really happened...

In a Haemophilia Society 'Haemofact' leaflet, May 1984 Release No. 3, Christine A. Lee, Senior Registrar at the Royal Free Haemophilia Centre, comments rather too conservatively on the occurrence of AIDS in UK haemophiliacs:

"The occurrence of acquired immunodeficiency syndrome (AIDS) in haemophiliac patients has strongly suggested transmission of the disorder by blood products and epidemiological studies have suggested it may be related to a transmissible agent."

"In Great Britain the number of haemophiliacs who have been reported with AIDS remain at 2. Thus the incidence is less than 1 in 1,000 patients at risk."

Note: We are concerned to read that the incidence of AIDS in haemophiliacs was only described at 0.1%. Surely this was a gross misrepresentation of the risk from blood products? Christine A. Lee's comments on the risk suggests a misleading mindset as she seemed to think the total haemophilia community totalled 2,000. This could not possibly have been right - it should've been nearer 5,000. We have to wonder what statistical information this population figure was based on?

Background: The following list of developments detail what we believe Christine A. Lee should have considered before making the statement; (after all, the clues were there as to the real scale of the risk):

• In January 1983, Desforges published an article in the NEJM on Hemophiliacs and AIDS, recommending that cryoprecipitate rather than concentrate be used.
• In August 1983, the first UK haemophiliac dies of AIDS from US Factor VIII administered in December 1981.
• Whilst in October 1983, in the UK, there were only 2 haemophiliac cases of AIDS, in the USA, however, there were 22 patients with N.I.H diagnostic criteria for AIDS and 10 patients had by that time died.
• In January 1984, a summary was published in the NEJM of 18 US cases of AIDS where blood components were involved.
• By April 1984, the National Hemophilia Foundation learned that the CDC had received reports of 9 new cases of AIDS among US haemophiliacs.

Note: We would like to point out that only 10 months later, (March 1985), the DHSS Finance Division (FA1), expresses fears that the haemophiliac population (around 5,000) could be very seriously affected indeed, with two-thirds possibly already sero-positive, and 240 haemophiliacs possibly manifesting AIDS within one year, and as many as 1,200 eventually developing AIDS.

In the minutes of the 16th Meeting of the United Kingdom Haemophilia Centre Directors the results of an HTLV-III (now termed HIV) antibody survey in UK Haemophilia Centres were presented by Dr Rizza.

"The response from Centres had been good and information had been received from 81 Centres, giving results for HTLV-III tests on a total of 2,570 patients." (see page 6, last paragraph)

• Analysis of the results showed that 44% of the Haemophilia A patients tested were found to have HTLV-III antibodies.
• Therefore, 1,130 out of 2,570 Haemophilia A patients tested in the UK in October 1985 were HIV positive.

Note: We have to ask ourselves how infection rates with figures this high could have happened? Were we not informed by Dr Christine A. Lee via a Haemofact leaflet of May 1984, that the incidence of AIDS in UK Haemophiliacs was merely 1 in 1,000, representing only 0.1%? So how did this happen?

Background: The DHSS Finance Division were right about one thing, in March 1985 they expressed fears that the haemophiliac population (circa 5,000) could be very seriously affected indeed, with two-thirds possibly already positive with as many as 1,200 eventually going on to develop AIDS. (see Related Entries link below)

In a letter to the DHSS from the NBTS West Midlands Regional Health Authority in October 1985, the NBTS shows startling overconfidence:

"I should add that we have screened over 24,000 donations by now, without discerning a single seropositive case...."

"I think the public and Parliamentary concern is exaggerated and misplaced. Much greater funds and concern should be invested in the more difficult area of influencing attitudes and behaviour rather than allowing them to be dissipated and assuaged in the area of blood transfusion."

Note: This statement is overconfident and unhelpful.