Looking at the NASEM Report: Let's Get Started

Nancy René's Looking at the NASEM Report Series Let's Get Started When I start a huge reference book like The National Academies of Sciences, Engineering, and Medicine (NASEM) Report—Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action—I usually don’t go in order from the first chapter to the last, I’m interested in seeing where the information comes from, who the authors are and what was their purpose. The NASEM report came about when the Office of Minority Health asked the Health and Medicine Division at NASEM to develop a strategic plan to address sickle cell disease in the United States. I checked this out and thought, "OK good, this addresses most of the concerns that people have shared with me through the years of my involvement with sickle cell." Next I wanted to see who had been involved in actually writing the Report, was there anyone I knew? For that I had to skip back to Appendix C where I found some familiar names. First there was Dr. Ify Osunkwo who runs a large sickle cell program and teaches at the University of North Carolina, Chapel Hill. She is a knowledgeable and enthusiastic doctor who has presented at several national conferences. She is always a pleasure to listen to. Next I came to Susan Paulukonis from the Sickle Cell Tracking Program in California. Susan has been very helpful in providing data on the sickle cell population in California. These are data that can be used in making presentations on issues facing our community. I am glad that someone who understands this aspect of the disease was part of the committee. The last person I knew in this powerful group was Dr. Kim Smith-Whitley. I met her when we were both Board Members at the Sickle Cell Disease Association of America, Inc. (SCDAA) and have heard her presentations over the last several years, both at SCDAA conventions and for Cayenne Wellness Summits in California. She runs a large sickle cell program at Children’s Hospital of Philadelphia and understands both the medical and social needs of her patients. I am so glad she put her time and expertise into this document. I hope you will check out the people who contributed to this report, in fact that’s your first Homework Assignment. The link to Appendix C is here. Please use the SMART Social Wall to tell us a little about anyone you know who has been involved in this Report. I’m getting excited to learn more about this report, and I hope you are too. I know that a group of knowledgeable people can really begin to overcome the barriers to effective healthcare for those with sickle cell. Remember, you have homework! Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States