March 2003 Lifeline Cooley’s Anemia Foundation L e a d i n g t h e F i g h t A g a i n s t T h a l a s s e m i a CDC & CAF Launch Thalassemia Program by Jeanne Devine and Craig Butler Responding to patient concerns comprehensive thalassemia treatment The CDC has also provided significant centers to identify currently underserved funding for a related initiative for Prevention about the possible transmission people, promote blood safety, encourage of Complications of Thalassemia. This of illnesses through blood healthy behaviors, and provide information project involves a cooperative agreement and training to medical professionals. between the CDC and comprehensive transfusions, the Cooley’s thalassemia treatment centers across the Anemia Foundation (CAF) U.S. aimed at preventing complications for individuals with thalassemia. CAF will work successfully appealed to the with these thalassemia treatment centers to U.S. Congress to increase achieve common goals of the two projects. access to prevention services Key to the success of both programs is the gathering of complete, accurate information for people with thalassemia. from the thalassemia population in the U.S. For that reason, Ms. Sawh requests that all Congress in turn awarded the Centers for individuals with thalassemia update their Disease Control and Prevention (CDC) contact information with CAF. This will $2.2 million to initiate a new five-year enable CAF to keep them informed about program to ensure that people with developments with the CDC program. thalassemia are identified and have access to appropriate information, treatment and Another goal of the program, providing Under the terms of the agreement, the prevention services. information and training to medical CDC will provide first-year funding to CAF professionals, has long been a primary CAF has entered into a cooperative in the amount of $172,650. CAF has hired concern for CAF. Most medical agreement with the CDC to help develop an Outreach Coordinator to help implement professionals do not possess an in-depth and implement a major component of this the program, under the supervision of knowledge about the various complications project, the Thalassemia Prevention National Executive Director Jayne Restivo of thalassemia and/or the most current Education and Outreach Program. The and Patient Services Director Radhika treatments. Supplying CAF with updated Foundation will work with the CDC and Sawh (see story, page 7). (article cont’d page 3) contents Legislative News 3 • Interview with Dr. Claude Lenfant Philanthropy News 4 • CAF Set to Benefit from Wellspent.Org • CAF Receives Support from New York • Gala 2003 • Meeting in Chicago • Oral Chelator • Blood Donations Needed • In Memoriam Patient News 6 • Outreach Coordinator • Patient Services: There for You • TAG Conference • Iron Content in Heart • Thalassemia Clinical Research Network • ASH Convention Medical News 8 • CME Seminar • Blood Safety • Stefano Rivella • Non Invasive Liver Measurement International News 12 • TIF Holds First Associations Meeting • Reactions to TIF Associations Workshop • All You Need is the Wish • Chapter Updates • Chapters Help Finance Medical Technology • Chapter Contact Numbers Chapter News 14 • New Chapter Development Manager • Tribute to the Founders of CAF President’s Message I am amazed by the strides we have made in And these are just the high points! the past year or two, though I should probably There are countless other initiatives underway have anticipated it based on our history. We that will improve the quality of life for our are, after all, “The Mouse That Roared.” patients and their families. Our executive Thanks to the diligent work of dozens of director, Jayne Restivo, has put together a people for dozens of years, we are recognized staff that understands this completely and as a very influential group in Washington D.C., uses this as a mantra to guide them through and the results have been phenomenal. Frank Somma their day-to-day activities. Their caring attitude Currently we are looking forward to clinical and motivation to help our patients is apparent trials on deferiprone and Desferal in our in everything they do. Please rely on them to clinical network (a 12.5 million dollar help you manage your care; get you the latest investment by the NIH). We have a blood medical information or insurance help; locate a safety program through the CDC (a two hard-to-find needle; get you a replacement million dollar annual investment by congress). pump; interface with the billing department of The Maternal and Child Health Bureau has your hospital, etc. The list goes on and on. pledged half a million annually in order to Much of what I am mentioning here is on our continue helping financially challenged patients website, www.cooleysanemia.org Please visit handle pregnancies in a healthy and informed it often to stay abreast of the latest goings on manner. at YOUR foundation. We have had over 100 patients’ livers May God bless you all. evaluated by SQUID, and are currently setting up the same availability to measure heart iron Frank Somma with MRI (see Medical News). National Executive Director’s Message The gift of blood is a gift of life. A single pint even more severe shortages grows more and of donated blood can help up to four people. more likely. As CAF’s National Executive Director, I spend Even without these factors, the need for a great deal of time talking to people about blood grows by 11% each year, while blood, because of its importance to the donations increase by only 8%. And thalassemia community. I constantly nationwide, less than 5% of those eligible to encourage people I meet to give blood, not donate blood do so. just because our patients need it but because Jayne Restivo For a person with thalassemia, who may need everyone needs it. a transfusion as often as every two weeks, Our nation’s supply of available blood is never those numbers are frightening. as large as we would like, but it tends to be If you are one of the 95% who has not particularly low during the winter months. donated blood this year, I urge you to call This has been especially true this winter, 1-888-USBLOOD or 1-800-GIVELIFE today. when we have seen much blood quarantined For people with thalassemia, it truly is the gift due to possible infection, a drop in donations of life. due to harsh weather and the removal of imported blood from Europe. With the Jayne Restivo prospect of war looming, the possibility of statement of purpose The Cooley’s Anemia Foundation, incorporated in 1954, is the only national, EXECUTIVE COMMITTEE nonprofit health organization dedicated to serving patients afflicted with various Frank Somma President forms of thalassemia, most notably the major form of this genetic blood disease, Cammie Brandofino 1st Vice President Cooley’s anemia. Terri DiFilippo Treasurer Ralph Colasanti Secretary the foundation’s mission Nunzio Cazzetta Joseph Giammalvo Amy Celento-Stamateris Diane Kamble • Advancing the treatment and cure for this fatal blood disease. Peter Chieco Richard Mancino • Enhancing the quality of life of patients. Dr. Alan Cohen, MD Edward Martella • Educating the medical profession, thalassemia trait carriers and the public Robert Ficarra Concetta Paradiso Diane Germann about thalassemia/Cooley’s anemia. Jayne Restivo National Executive Director CAF : 129-09 26th Avenue, Suite 203, Flushing, NY 11354 Craig Butler Lifeline Editor (800) 522-7222 (718) 321-CURE (2873) (718) 321-3340 FAX www.cooleysanemia.org l e g i s l a t i v e n e w s CDC (cont’d from front page) contact information will enable us to connect each primary care physician with a comprehensive thalassemia treatment center. This will be an excellent resource Interview with Dr. Claude Lenfant for physicians that will allow them to communicate with many different specialists who are familiar with the issues faced by people with thalassemia, thereby Dr. Claude Lenfant was appointed Director ensuring that their patients receive the of the National Heart, Lung and Blood most effective care. Institute (NHLBI), which provides funding The CDC program will also encourage for the Thalassemia Clinical Research healthy behaviors that reduce or prevent Network, on July 6, 1982. Born in Paris, complications of thalassemia and promote Dr. Lenfant received his B.S. degree from blood safety. The first blood safety issue the University of Rennes and his M.D. from that will be addressed by the CDC will be the University of Paris. He was a transmission of the West Nile Virus. This postdoctoral fellow at both the University issue is of particular interest to the of Buffalo and Columbia University, and a thalassemia community due to the large member of the faculty of the University of number of transfusions involved in Washington, Seattle. His association with treatment of the disorder. the NHLBI (then known as the NHLI) began in 1970. Dr. Lenfant is the recipient of numerous awards, including the Surgeon General’s Exemplary Award and the Dr Claude Lenfant American Society of Hematology’s name of the game! I think one of the most Outstanding Service Award. He graciously striking changes that I have witnessed is took time out of his busy schedule to our increased ability to make the benefits of answer the following questions for CAF. science available to the public, patients and their families, and health professionals— You have been associated with a wide though I should note that this remains our range of organizations and projects. Are greatest challenge. The other change I there particular projects or affiliations that have seen is the increasing complexity of you would like to mention? scientific research, so that investigations I have taken special pleasure in projects require a mix of different areas of expertise that strive to improve the care of patients, and the ability to coordinate that expertise both here and abroad.