Source: "Commission of Inquiry on the Blood System in Canada: Final Report"
Source: "Commission of Inquiry on the Blood System in Canada: Final Report"
Commentary from Volume 1, Part III #13 (pp. 374-5)
The notification of persons potentially infected with HIV through blood components ought to have been a high priority of the Red Cross, hospitals, and public health officials. Without knowledge of their infection, these persons were denied the opportunity of preventing infection of their sexual partners and of any children who might be conceived. They were also denied the opportunity of seeking treatment. Every infected person unaware of his or her condition could, moreover, infect others by donating blood. Given what was known about the infectivity of HIV through blood components and the latency period of the disease at that time, there should have been no doubt, from the summer of 1984 onwards, that there was a significant number of persons who had been infected with HIV from blood transfusions and who were unaware of their condition. Despite the clear urgency to inform those persons and to protect others who might be infected through them, the measures that were adopted were neither timely nor effective. This was an urgency that was apparent at the time.
With the exception of Nova Scotia, no leadership was taken by provincial governments to encourage or facilitate look-backs and trace-backs. There was little formal communication between Red Cross blood centres and public health departments about the names of persons infected with AIDS or HIV. There were few, if any, government measures to encourage or require hospitals to keep records of transfusions that would have made it possible to locate recipients.
The federal government disregarded invitations for it to act. In July 1985, the Bureau of Biologics characterized the issue of notification as one of "ethics" best left to professional societies. For its part, the Laboratory Centre for Disease Control did not encourage physicians to report cases of AIDS and HIV as it had done for toxic shock syndrome. Nor did it encourage physicians to inform the Red Cross about patients diagnosed with AIDS who might donate blood. Although it was not required to do so, the Laboratory Centre for Disease Control could have taken a position of leadership and encouraged provincial public health departments to give the information in their possession to the Red Cross.
As a result of the lack of government leadership, the Red Cross was largely left on its own to address an issue for which it was ill-equipped and insufficiently motivated. The Red Cross had never communicated with recipients of blood products. It had no records of its own to trace blood components after they had reached the hospital. It had no power to compel hospitals to keep appropriate records of the use of blood components, nor could it compel public health authorities or physicians to give it information about persons with AIDS and HIV.
That the Red Cross was insufficiently motivated to engage in look-backs is evident in the fact that it did not begin to develop a national policy about look-backs and trace-backs until the summer of 1986. The development of that policy then took more than a year, and after it was developed the national policy was not carried out in a timely way. Instead, the issue of notifying recipients of potentially infected blood components proceeded through the convoluted committee structure of the Red Cross that had previously proved so ineffective in dealing with such other AIDS issues as the preparation of the donor-screening pamphlet. By the summer of 1988, a full year after the policy was developed, and nearly three years after the implementation of testing, only approximately 20 per cent of documented look-back cases had been completed.
In the notification of recipients, Canada trailed significantly behind the United States. Look-backs were well under way throughout the United States in 1986. By contrast, a national look-back policy was not in place in Canada until the autumn of 1987. It is important to note that U.S. blood bankers and public health officials have been criticized by their country's Institute of Medicine for failing to develop a look-back policy earlier. The Institute of Medicine also found it "peculiar" that recommendations by the U.S. Food and Drug Administration about donor deferral in 1983 contained no recom-mendations concerning recipients of blood products derived from persons subsequently found to be infected. The institute concluded that there was abundant evidence by 1985 to justify "a vigorous stance about look-back." No comfort can be taken from the fact that, with respect to this important public health problem, Canada was "only" a year behind the United States.
The difficulty of conducting effective look-backs, not least because of the inadequacy of hospital records, but also because of the mobility of donors and the amount of time that had elapsed, was obvious by 1988. One might have expected those difficulties to have encouraged the Red Cross and public health officials to find alternative means of notifying recipients of poten-tially infected components. In particular, it should have seemed obvious that communication to the recipients of blood components, either directly or through the mass media, could be an effective means of identifying those who were infected. However, few efforts were made to do so until the early 1990s. In particular, public statements made by the Red Cross, advising those concerned to consult their physicians, appear to have been aimed more at allaying fears than at communicating useful information to potentially infected persons. Government officials appear to have been more concerned about preventing public questioning about the safety of the blood system and about deflecting controversy than about informing persons who might be infected. It was only when government officials were met with the findings of the Hospital for Sick Children study in 1993 and the ensuing publicity that they acted in an appropriately assertive manner.
 Controversies
| Krever Commentary on Tracebacks/Lookbacks |