Page 23 - SCDAA Convention 2022

NATIONAL HIGHLIGHTS

The Sickle Cell Disease Partnership was formed this year to call on Congress and the administration to adopt the
National Academies of Science, Engineering, and Medicine’s policy recommendations outlined in its landmark 2020
report, “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.” SCDAA joined 15 organizations
representing a diverse cross-section of patient advocates, health care providers, health insurers, biopharmaceutical
companies and others committed to improving the lives and outcomes of individuals living with sickle cell disease.

In April, SCDAA hosted our annual Advocacy Day events. Community members joined us virtually for a crash course in
sickle cell advocacy. Participants learned to use their lived experience to push for policy change and connected with other
advocates in their area to plan meetings with their elected officials.

The SCD C.A.R.E.S. Consortium

We can’t advance sickle cell treatment
without clinical trials. That’s why we are
pleased to announce the newly formed SCD
C.A.R.E.S. (Collaboration of Advocates
for Research, Education and Science)
Consortium. SCDAA established this initiative
to educate the community about the importance
of clinical trials and connect patients through
SCDAA’s Clinical Trial Finder launched in 2021.
Learn more about the SCD C.A.R.E.S.
Consortium: bit.ly/SCDCares

This year the SCDAA Clinical Trial Finder mobile app — a convenient companion app that replicates the Clinical Trial
Finder website — was created and is available for free in the iOS and Android app stores.

Key Research

SCDAA’s Medical and Research Advisory Committee (MARAC) and Dr. Lewis Hsu, SCDAA chief medical officer,
supported new research into pediatric sickle cell care and treatment this year.

• Prioritizing Sickle Cell Disease, an article co-authored by Dr. Hsu for the American Academy of Pediatrics, is a call
to action within the medical community to work together to maximize available screenings and treatments.
• Preventing Sickle Cell Anemia Complications in Children, published in the Centers for Disease Control and
Prevention Vital Signs publication, reports fewer than 50% of children 2-16 years old received the recommended
screening for stroke in 2019. Both publications identify racism and discrimination as barriers to quality care and
potentially lifesaving preventative measures for children with SCD. This article was written with input from MARAC.

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