President's Corner

Dear Colleagues:

On March 10, 2008, The National Heart, Lung, and Blood Institute (NHLBI) announced the beginning of a comprehensive and innovative restructuring of its research program in sickle cell disease (SCD).  The Sickle Cell Disease Association of America (SCDAA) has been working since the announcement to better understand the direct impact of changes to individuals with SCD, their families and the implications to the broader Sickle Cell Disease Community.  Given the size of the NHLBI and the scope of the changes, it will take some time to appreciate fully the intended changes.

Nevertheless, SCDAA has an initial response to these changes, particularly from the perspective of our mission to advocate for a cure and to improve the quality of life for those affected by the disease.  SCDAA’s advocacy remains a part of the strong working relationship enjoyed between SCDAA and NHLBI as exemplified by the September 2007 joint convention we shared.  SCDAA has maintained a position throughout this relationship that there are inequities in the system as it relates to research and clinical investments in the SCD community.  Therefore, we are encouraged by the focus the NHLBI is bringing to this issue.  As communicated in their announcement, we look forward to working with NHLBI in developing an appropriate and effective education campaign that resonates with the population most affected by the disease and benefits the most from the information conveyed.  SCDAA is equally favorable toward the plans to increase basic research to find a much needed universal cure for SCD.

There are elements of the announcement that we still seek to better understand.  For instance, we are working to ensure that the reconfiguration of the 10 Comprehensive Sickle Cell Centers legislated by Congress does not result in any loss of services to patients with SCD, or the dilution of support  for the number of centers and the nature of vital research infrastructure available to the SCD Community.   SCDAA maintains a position that SCD is not as well supported in its current state as other less prevalent diseases, and is optimistic that this renewed focus will promote greater parity.  SCDAA will continue to work with key stakeholders including individuals with SCD, families, SCD Community-Based Organizations, our legislative champions, NHLBI, other Government Agencies, and the greater SCD community to ensure the proper recognition of our recommendations and concerns related to the emerging programmatic changes underway at the NHLBI.

We look forward to the collaborative work ahead, and working to ensure that any proposed modifications have an indelible and positive impact on individuals with SCD.

Willarda V. Edwards, MD, MBA
SCDAA, President and COO