WFH NETWORK

Remembering a lost generation

Over thirty years ago, the global bleeding disorders community faced a tragedy that made an indelible impact on the lives of many who were left with lasting health consequences.

In the early 1980s, the human immunodeficiency virus (HIV) entered into the blood supply and in turn, many people with hemophilia developed acquired immune deficiency syndrome (AIDs), along with hepatitis C.

Prior to this, there was a sense of optimism emerging regarding hemophilia care. The hopefulness over the availability of new and effective treatments ended as more and more countries experienced HIV contamination within their blood donation supplies. Globally, tens of thousands of people with hemophilia contracted HIV, along with hepatitis, from their treatment products. Since this crisis occurred, great effort has gone into monitoring the blood donation supply to ensure that treatment products are safe and secure through donor screening, testing of plasma pools and the implementation of manufacturing steps that eliminate or inactivate viruses.

Advocacy continues globally to obtain justice for those that were lost and for those that continue to face multiple hardships due to this tragedy. Around the world, many countries have held inquiries, ceremonies, passed legislation, and set up organizations to protect future generations.

As recently as this past November, the French Hemophilia Society (AFH) held a commemoration ceremony marking 30 years since the blood contamination crisis hit France. Together with the French Ministre de la Santé, Marisol Touraine, the AFH reaffirmed its determination not to let this occur again.

The global bleeding disorders community will continue to ensure that this is a chapter from our history will not be forgotten. WFH founder Frank Schnabel was one of the victims of this crisis. His reaffirmation when reflecting on what had happened continues to be inspirational: “We are going to emerge victorious.”