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November 16, 2009 - CAF National Executive Director Gina Cioffi urges the thalassemia community to provide feedback on a specific topic area in the proposed Healthy People 2020 initiative.
Dear Thalassemia Community Members, We need your help regarding an important “Quality of Life” issue for people with thalassemia. The government is in the process of accepting public comments on its objectives for the “Healthy People 2020” program. The draft of the program includes a section for hemoglobinopathies, part of which looks at measuring and improving the health of thalassemia patients. However, one important measurement - that of quality of life among people with blood disorders – has been taken out of this section. We want your help to keep this measurement in place. What is Healthy People? For three decades, Healthy People has provided a comprehensive set of national 10-year health promotion and disease prevention objectives aimed at improving the health of all Americans. It is grounded in the notion that establishing objectives and providing benchmarks to track and monitor progress over time can motivate, guide, and focus action. Healthy People 2020 will continue in the tradition of its predecessors to define the vision and strategy for building a healthier nation. The Quality of Life Issue As part of Healthy People 2020, our federal public health servants developed objectives for Blood Disorders and Blood Safety (BDBS) with input from the Cooley's Anemia Foundation. Although we proposed including an objective for Quality of Life (QoL) in Blood Disorders, our request is pending, and will be based on a decision as to whether all objectives for QoL will be included in one overarching QoL Topic Area or whether they will be included in disease-specific topic areas. From what I understand at this time, that means that QoL for sickle cell, thalassemia, and hemophilia could be in the QoL Topic Area and not in the Blood Disorders and Blood Safety Topic Area. What You Can Do We believe that the specific quality of life issues among people with blood disorders are unique and are asking that you write to the Department of Health and Human Services both to support the objectives for Blood Disorders and Blood Safety and also to make the case for keeping the Quality of Life measurements in place in this section. The proposed objectives for Blood Disorders and Blood Safety Objectives are posted at: http://www.healthypeople.gov/hp2020/Objectives/TopicArea.aspx?id=13&TopicArea=Blood+Disorders+and+Blood+Safety If you go to the above link, in addition to being able to read about the objectives, you can leave a comment in which you express your feeling that the Quality of Life measurements for hemoglobinopathies need to be kept in the Blood Disorders and Blood Safety topic section, rather than in the larger and separate Quality of Life topic section. Simply click on the “Submit a Topic Area Comment” link at the top of the page to provide your input. If you wish to send a comment by postal mail or fax, you may do so to this address: RADM Penelope Slade-Sawyer, P.T., M.S.W.
Director
Office of Disease Prevention and Health PromotionU.S. Department of Health and Human Services
Office of Disease Prevention and Health Promotion
Office of Public Health and Science, Office of the Secretary
1101 Wootton Parkway, Suite LL100
Rockville, MD 20852
Fax (240) 453-8282
We urge you to take the time to visit this website and respond to this opportunity to make a difference! Thank you, Gina Cioffi CAF National Executive Director |
