Committee Of Ten Thousand

Programs: Overviewduring 2014, the committee of ten thousand (cott) continued its role as an important advocate of the hiv, aids and hcv-infected hemophilia communities. Cott developed closer communcation with various bleeding disorder groups as it worked to accomplish its goals. The division of blood disorders of the centers for disease control and prevention (cdc) contract awarded to cott in 2013 was almost completed. Related to our report, "ripples in the pond: rebuilding trust in a community betrayed," cott continued its working group calls every month to hear the concerns of the bleeding disorder community, including those who are affected by hiv/aids and hepatitis c. The information gathered is used to illustrate the tragic consequences caused by the contamination of blood and blood products in the last 40 years. In the process of completing the report, we found that working group calls remain a vital connection between cott and the hemophilia community in discussing key issues that affect the community today. Our calls provided a forum to discuss a range of issues, including populations that are under-served by the medical establishment (such as women with bleeding disorders), changes in recombinant factor blood products, and the unaddressed issue of ptsd due to a lack of psychiactric treatment available in the community. We continue to work closely with the blood products advisory committee of the food and drug administration's center for biologics evaluation and research. We also continue to monitor the nation's blood supply and its regulation in our publication, the washington update. Projects and intiativeschronic disease education:through our national headquarters in washington dc, cott continues to devote resources, both human and financial, to education regarding chronic disease communities such as hemophilia. Cott provides information regarding the medical, economic, and psychosocial issues faced by our community and other chronic disease communities. Although our primary constituency is the hiv/aids, and hcv infected hemophilia community, we continue to work cooperatively with other chronic disease advocacy organizations on a wide array of educational and advocacy initiatives and projects. End user advocacy:cott continues to work closely with the federal regulatory system for health care. Cott was the first blood products end user community to gain appointment to the two existing federal regulatory advisory committees addressing the safety and availability of our nations blood supply. As a community (hemophilia) dependent on blood products, and the hardest hit by the aids/blood epidemic, we remain uniquely qualified to represent the interests of the end users of blood/blood products. Cott works closely with numerous federal and state agencies to ensure the safety of the biologic products our community depends on for their health and productivity. From the centers for disease control, to the food and drug administration, to state departments of health, cott ensures that the grass roots voices of the hiv/aids, and/or hcv infected hemophilia community are heard. We also provide ongoing education and information for congress regarding blood safety and issues of concern for chronic disease communities. Hiv/aids advocate program:cott offers a national hiv/aids, and/or hepatitis c, peer advocacy and support program for individuals and families in the hemophilia/ bleeding disorders community. The hemophilia community was devastated by the twin blood-borne epidemics of hiv/aids and hepatitis c during the late 1970s, and 1980s. Over 90 percent of the severe hemophilia community was infected with hiv/aids through tainted blood products. The impact of this worst medical disaster in us history continues to be felt by the hemophilia community. Cott remains the only national organization providing advocacy and support for this community. Approximately 200 families are currently working with cotts national advocate. Rachel warner scholarship fund:the rachel warner scholarship fund is designed to annually provide three one thousand dollar awards for higher education for young people in our community. Murphy fund:the murphy fund provides one time, five hundred dollar, awards to families in need. This program has been very successful in providing a limited safety net for families addressing hiv/aids in the hemophilia community.