Seventh Annual Public Interest Organization Meeting

Mr. Carl Weixler, President, Hemophilia Federation of America, communicated the perspective of hemophilia patients, who depend on a safe blood supply. He noted that he is one of relatively few surviving hemophilia patients in his age group; at age 49, approximately 73  percent of his peers have died. In the United States, the hemophilia community currently comprises approximately 15,000-20,000 patients.

Mr. Weixler summarized his personal experience as part of a "transition" group of hemophilia patients who formerly used whole blood and transitioned to using pooled blood and then factor concentrate. Each type of treatment posed major difficulties for patients.

The use of factor concentrate, administered intravenously at home, obviated the need for patients to go to the hospital and reduced bleeding into the joints, thereby lessening damage. Yet, this improved treatment initially made things worse for patients because the pooled plasma that was used to make the concentrate included plasma from prisoners, who have high rates of infection with HIV and HCV. Mr. Weixler noted that this practice immediately rendered the blood supply in the United States "unclean" and that the hemophilia community became the "canaries in the coal mine." The effects were devastating, as approximately 5,500 hemophilia patients died.

Mr. Weixler emphasized that he is living with hemophilia and also with HIV/HCV co-infections that he acquired almost 20 years ago. He noted that to live with hemophilia and these co-infections is to live with fear, anger, sorrow, depression, and survivor guilt. Elaborating on these emotions, Mr. Weixler said he feels like a "walking biohazard" from which others veer away. At the same time, he feels like a "walking miracle," because he has yet to need treatment for HIV or HCV. Mr. Weixler said he stays in contact with the orphans of hemophilia patients who died, so he is constantly reminded of the community's suffering. To cope with his sorrow and depression, he uses antidepressants and finds ways to celebrate the lives of those who died.

Mr. Weixler noted the importance of staying involved and turning negative feelings into positive action. For example, he does not hesitate to ask "hard questions" of the medical community and he has successfully lobbied Congress to pass new legislation for compassionate care for the hemophilia community. He noted that this community still depends on the nation's blood supply.

In concluding, Mr. Weixler emphasized that life is the "bottom line," not dollars. He thanked the NHLBI for continuing to support the development of tests (e.g., for West Nile virus) to ensure a safe blood supply. He encouraged all of the PIOs to work together and to be "squeaky wheels."