Standing Strong: Committee of Ten Thousand MARCH 12, 2014 Committee of Ten Thousand (COTT) has for 23 years been an advocate for those with hemophilia HIV/AIDS and Hepatitis C. In 2013 COTT continued to work in a broad collaborative effort for blood safety and informed consent in the bleeding disorder community. Our organization is a 501c3 non-profit and as per our by-laws, we do not solicit or accept donations from pharmaceutical companies. This is to maintain our commitment to avoid conflicts of interest in our discussions and recommendations regarding the nations blood supply and the blood products manufactured from that source. Statement of Program Accomplishments Overview: During 2013, the Committee of Ten Thousand continued to strengthen its position as the voice of the HIV, AIDS and HCV-infected hemophilia communities. Working with the American Plasma Users Coalition (A-Plus), COTT in 2012 also renewed its relationship with the Division of Blood Disorders at the Center for Disease Control and Prevention (CDC), culminating with a CDC request that COTT co-sponsor the CDC Public Health and Bleeding Disorders national conference in March of 2013. We continue to work closely with the Blood Products Advisory Committee of the Food and Drug Administrations Center for Biologics Evaluation and Research. COTT was awarded In September 2013 with a contract from CDC to prepare a detailed narrative of the challenges faced by the Hemophilia community past to present and the possible ways CDC could play a role in meaningful intervention. We also continue to monitor the nations blood supply and its regulation in our publication, The Washington Update. Chronic 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. Publication: In October of 2013 our President Corey Dubin and World renowned DR Don Francis co-authored and article in the prestigious Transfusion magazine on the tainted blood AIDS epidemic 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 a 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. COTT is committed to working within the context of broad collaborative efforts and coalition building with a wide array of communities, agencies, organizations, and individuals who seek control individual over their own health care. A central theme of the COTT is the development and implementation of programmatic initiatives which illuminate an empowerment road map for the diverse communities impacted by HIV/AIDS and other chronic diseases/disorders. We believe that health is a right and not a privilege and seek to create a world where the health and well being of all peoples replaces profit as the priority. Sections COTT Announcements COTT Canary COTT News Historical Record Memorial Peer Advocacy & Support Treatment and Care Treatment Updates Washington Updates Side Heading What action, if any, do you want your members to take? 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Posted on: Wed, 12 Mar 2014 19:00:00 +0000