THE NATIONAL ACADEMIES OF SCIENCES, ENGINEERING, AND MEDICINE
Health and Medicine Division
Board on Health Care Services
Committee on Sickle Cell Disease in Social Security Disability Evaluations
*****
Congressional Briefing
Thursday, September 4, 2025 – 3:00 p.m.
via Zoom
on
Sickle Cell Disease in Social Security Disability Evaluations:
Pain and Treatment Settings
This new report from the National Academies of Sciences, Engineering, and Medicine is the first of a two-report series requested by the Social Security Administration (SSA) to address best practices and community experiences in the management and treatment of sickle cell disease (SCD). SCD, a group of inherited blood disorders affecting approximately 100,000 people in the United States, is a chronic, life-long condition that affects every organ system in the body. The life of an individual with SCD is often complicated by frequent bouts of extreme pain and hospitalizations, fatigue, organ damage, and mental health conditions. The cumulative burden of SCD-related health effects can significantly affect quality of life, including the ability to regularly attend and participate fully in school and work.
This first report reviews the latest published scientific research and generates findings and conclusions on a variety of topics related to SCD. It presents the committee's findings and conclusions pertaining to SCD pain crises, pain management, and treatment settings relevant to SSA disability determinations.
This briefing was for members of Congress and congressional staff only. The report was publicly released in June 12, 2025 and can be found, in its entirety, on the Web site of the National Academies Press.