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

Recommendation	House	Senate	HHS	HRSA	CMS	CDC	FDA	NIH
HHS SCD education and awareness	some progress	some progress	some progress	n/a	n/a	n/a	n/a	n/a

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

Screening, Registries, and Surveillance

Recommendation	House	Senate	HHS	HRSA	CMS	CDC	FDA	NIH
State public health surveillance systems	no progress	no progress	n/a	n/a	n/a	some progress	n/a	n/a
SCD clinical data registry	no progress	no progress	some progress	no progress	n/a	significant progress	n/a	no progress
Working group to identify existing and disparate sources of data	no progress	no progress	significant progress	n/a	n/a	n/a	n/a	n/a
Standardized communication and use of newborn screening positive results in genetic counseling	no progress	no progress	n/a	significant progress	n/a	n/a	n/a	n/a

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

Complications of Sickle Cell Disease and Current Management Approaches

Recommendation	House	Senate	HHS	HRSA	CMS	CDC	FDA	NIH
Funding for SCD clinical practice guidelines	some progress	some progress	n/a	n/a	n/a	some progress	n/a	n/a
Funding for the pathophysiology of sickle cell treat	no progress	no progress	n/a	n/a	n/a	n/a	n/a	some progress
Promote education and awareness of sickle cell trait	some progress	some progress	some progress	n/a	n/a	some progress	n/a	n/a

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

Health Care Organization and Use

Recommendation	House	Senate	HHS	HRSA	CMS	CDC	FDA	NIH
Convening of stakeholders to delineate elements of a comprehensive system of SCD care	no progress	some progress	no progress	some progress	n/a	n/a	n/a	n/a
State Medicaid programs on reimbursement models for SCD care	some progress	some progress	n/a	n/a	no progress	n/a	n/a	n/a
Foster development of quality improvement collaboratives	no progress	some progress	n/a	no progress	no progress	no progress	no progress	no progress

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

Delivering High-Quality Sickle Cell Disease Care with a Prepared Workforce

Recommendation	House	Senate	HHS	HRSA	CMS	CDC	FDA	NIH
Research funding to assess quality of SCD care	some progress	some progress	no progress	no progress	no progress	no progress	no progress	significant progress
Required reporting of SCD quality measures	no progress	no progress	n/a	n/a	some progress	n/a	n/a	n/a
Funding to identify and mitigate disparities in mortality and health outcomes	no progress	no progress	no progress	n/a	n/a	significant progress	n/a	significant progress
Disseminate information on loan repayment opportunities	some progress	some progress	n/a	some progress	n/a	n/a	n/a	no progress
SCD Mentoring Programs for Health Professionals	some progress	some progress	some progress	some progress	n/a	n/a	n/a	n/a
Approaches to financing curative therapies	no progress	no progress	n/a	n/a	some progress	n/a	n/a	n/a
Reimburse practice of shared decision making	no progress	no progress	no progress	n/a	n/a	n/a	no progress	no progress
Develop a systematic approach to encourage participation in clinical trials	no progress	no progress	n/a	n/a	n/a	n/a	no progress	no progress

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

Community Engagement and Patient Advocacy

Recommendation	House	Senate	HHS	HRSA	CMS	CDC	FDA	NIH
Partnerships with community based organizations and patient advocates to disseminate SCD clinical research information	some progress	no progress	no progress	n/a	n/a	n/a	n/a	n/a
Partnerships with community-based organizations and community health workers to engage SCD population in educational and advocacy programs	some progress	no progress	no progress	n/a	n/a	n/a	n/a	n/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