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
RecommendationHouseSenateHHSHRSACMSCDCFDANIH
HHS SCD education and awarenessno progressno progresssome progressn/an/an/an/an/a

View the full recommendations at the National Academies of Sciences, Engineering, and Medicine.

RecommendationHouseSenateHHSHRSACMSCDCFDANIH
State public health surveillance systemsno progressno progressn/an/an/asome progressn/an/a
SCD clinical data registryno progressno progresssome progressno progressn/an/an/ano progress
Working group to identify existing and disparate sources of datano progressno progressno progressn/an/an/an/an/a
Standardized communication and use of newborn screening positive results in genetic counselingno progressno progressn/asome progressn/an/an/an/a

View the full recommendations at the National Academies of Sciences, Engineering, and Medicine.

RecommendationHouseSenateHHSHRSACMSCDCFDANIH
Funding for SCD clinical practice guidelinessome progresssome progressn/an/an/asome progressn/an/a
Funding for the pathophysiology of sickle cell treatno progressno progressn/an/an/an/an/asome progress
Promote education and awareness of sickle cell traitsome progressno progressno progressn/an/asome progressn/an/a

View the full recommendations at the National Academies of Sciences, Engineering, and Medicine.

RecommendationHouseSenateHHSHRSACMSCDCFDANIH
Convening of stakeholders to delineate elements of a comprehensive system of SCD careno progressno progressno progressn/an/an/an/an/a
State Medicaid programs on reimbursement models for SCD caresome progresssome progressn/an/ano progressn/an/an/a
Foster development of quality improvement collaborativesno progressno progressn/ano progressno progressno progressno progressno progress

View the full recommendations at the National Academies of Sciences, Engineering, and Medicine.

RecommendationHouseSenateHHSHRSACMSCDCFDANIH
Research funding to assess quality of SCD caresome progresssome progressno progressno progressno progressno progressno progressno progress
Required reporting of SCD quality measuresno progressno progressn/an/ano progressn/an/an/a
Funding to identify and mitigate disparities in mortality and health outcomesno progressno progressno progressn/an/an/an/an/a
Disseminate information on loan repayment opportunitiessome progressno progressn/asome progressn/an/an/ano progress
SCD Mentoring Programs for Health Professionalssome progressno progresssome progresssome progressn/an/an/an/a
Approaches to financing curative therapiesno progressno progressn/an/ano progressn/an/an/a
Reimburse practice of shared decision makingno progressno progressno progressn/an/an/ano progressno progress
Develop a systematic approach to encourage participation in clinical trialsno progressno progressn/an/an/an/ano progressno progress

View the full recommendations at the National Academies of Sciences, Engineering, and Medicine.

RecommendationHouseSenateHHSHRSACMSCDCFDANIH
Partnerships with community based organizations and patient advocates to disseminate SCD clinical research informationsome progressno progressno progressn/an/an/an/an/a
Partnerships with community-based organizations and community health workers to engage SCD population in educational and advocacy programssome progressno progressno progressn/an/an/an/an/a

View the full recommendations at the National Academies of Sciences, Engineering, and Medicine.

There is a great urgency to implement the recommendations from the 2020 National Academies report on Addressing Sickle Cell Disease. Investing in pipeline treatments, novel insurance coverage models, improvements in health workforce diversity, and more robust disease surveillance are all necessary interventions to ensure that those with sickle cell disease are provided with effective, efficient, and compassionate care – care that is long overdue.

Victor J. Dzau, MD
President, National Academy of Medicine