Policy Tracker

The Sickle Cell Disease Partnership offers this Progress Tracker to help ourselves, policymakers, and stakeholders monitor and evaluate the degree of progress being made to advance, and ultimately implement, the federal health care policy recommendations in the landmark 2020 report from the National Academies: “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.” The Progress Tracker highlights both the good work that has been advanced thus far – as well as how much work remains to be done. The Partnership is committed to continued progress to advance these important policies.

Disclaimer: The tracker is based only on publicly available information and does not include information on internal government agency efforts that have not yet been made publicly available. The tracker captures a dynamic environment and is updated at least monthly.

Last updated June 4th, 2022.

Answer Key
n/a	The National Academies recommendation does not directly involve the agency.
no progress	No publicly available information available.
some progress	Some initial steps have been taken; work is initial and incomplete.
significant progress	There has been significant progress in taking steps to implement the recommendation. While full implementation has not occurred, this progress is meaningful.
complete	The agency has satisfied the National Academies recommendation or legislation related to the National Academies recommendation has passed.

Agency Acronymns
HHS	Department of Health and Human Services
HRSA	Health Resources and Services Administration
CMS	Centers for Medicare and Medicaid Services
CDC	Centers for Disease Control and Prevention
FDA	Food and Drug Administration
NIH	National Institutes of Health

Societal and Structural Contributors to Disease Impact