Leadership: Anger, Respect, and Results

by: Laurie Kelley

March is hemophilia awareness month and the recent upheaval over leadership in this country has me thinking about leadership in the hemophilia and bleeding disorder community. My son with hemophilia was born in 1987, a time when there was also a huge upheaval in leadership in the bleeding disorder community. We were a small community of 20,000 people approximately. But half of the community was lost, after contracting HIV from the very injectable medicine that was to save their lives. The pain, suffering and loss experienced by so many fomented into a groundswell of exceptional leadership. It was leadership born in a firestorm, when people realized that the government, blood banks and pharmaceutical companies did not watchdog the early CDC reports about a possible contamination. The community looked to its national nonprofit for leadership but there was massive conflict of interest as it received most of its funding from pharma. The community decided that it would need to unite at the grassroots level to make the changes that were too late for so many but would save future generations. Like now, anger was the common fuel to spark this battle. But what won in the end was not anger but a cool head. Coming to a table, negotiating, holding our ground, and making effective change.

The leaders who made this possible were amazing people. And somewhat ordinary people. One of these was Val Bias. Val became an icon in the US hemophilia community, who possessed charm but purpose, sharp intelligence but a relaxed posture; he was a polished speaker who could also listen deeply, respectfully.

Source: HemaBlog, Laurie Kelley, LA Kelley Communications, Inc.