What are Hepatitis C Lookback Programs?

You may have heard of a hep C lookback program, or may have been involved in one at some point during your diagnosis. The goal of hep C lookback programs are to locate and notify individuals who received transfusions, or blood products, from people infected with hep C. The overarching goal of these programs is to reduce further transmission of the virus by recommending that these potentially infected individuals seek hep C testing.¹

What are lookback programs?

Lookback is a process that was developed in the late 1990s in response to transfusion transmission of the hep C virus. The process involves:¹

• Identifying individuals who received blood from a donor confirmed to have hep C
• Notifying these individuals that they may have acquired hep C
• Recommending individuals get tested to confirm/rule out diagnosis of hep C
• If the individual tests positive, recommending treatment depending on individual factors.

Transfusion transmission statistics

Acquiring hep C through transfusion is not the most common way to be infected with hep C. In fact, only about 0.5-10% of hep C cases in the United States were caused by transmission from infected blood products.² Overall, it is estimated that 300,000 people in the US were infected with hep C through this means.³ That is not the case anymore, as there are multiple screening tools in place, resulting in far fewer people contracting hep C through this way.

History of lookback programs

The hep C epidemic was first acknowledged in the United States in the late 1990s, when the Centers for Disease Control and Prevention (CDC) began their multi-faceted efforts to reduce transmission. One of these programs included the targeted lookback program for those infected with hep C from transfusions.⁴

The lookback program required implementation by blood banks and physicians. It was outlined that it was the physician’s responsibility to inform those who were in contact with the infected blood.³

Outcomes

How effective have these programs been in reducing hep C infections globally? The effectiveness has been varied depending on the country and the expandability of the program; However, overall, these programs have been successful.

A lookback study based out of Washington, D.C contacted a total of 5,473 children who received transfusions between 1982 and 1992. Out of those people, 4,726 were successfully contacted. 2,758 of them were tested for hep C. Of those, 1.6% tested positive for Hep C, or a total of 43 people.⁵

One of Canada’s main lookback programs involved 100,000 people who received blood transfusions from the period of 1982 to 1990. Out of those 100,000, about half (50,000) managed to be contacted and received testing for hep C. Of those, 4% of them tested positive for hep C, or approximately 2,000 people.⁶

Overall, lookback programs have been a great step in identifying and notifying people potentially infected with hep C.

Have you been contacted through a lookback program? If so, what was your experience of the process? Share your thoughts below!