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A YEAR IN REVIEW:

NATIONAL HIGHLIGHTS

New Partnerships and Recognitions

The National Organization for Rare Disorders (NORD) recognized SCDAA with the Abbey S. Meyers Leadership
Award. The annual award honors organizations that serve members with strong leadership in advocacy and education.

Forma Therapeutics, Inc., and SCDAA joined forces to create a
public service announcement (PSA) to drive awareness and advance
meaningful understanding of sickle cell disease (SCD). The “Believe
it!” campaign consists of TV commercials and a radio PSA, with a call-
to-action to visit SCDBelieveIT.org where additional information on
sickle cell disease and SCDAA are available, and where the PSA can
also be viewed.

oneSCDvoice, an online community and knowledge hub, teamed
up with SCDAA to raise awareness and education about living well with sickle cell.

GBT and SCDAA partnered again this year to host the 11th Annual Sickle Cell Disease Therapeutics Conference.

Advocacy

SCDAA has been working with congressional sickle cell disease (SCD) champions and other community
and provider groups to advance bipartisan legislation to improve care for individuals with SCD. These
successful efforts supported the creation of three new pieces of legislation:

• The Sickle Cell Comprehensive Care Act was introduced to Congress in late December 2021 by Senators
Cory Booker and Tim Scott and Representatives Danny Davis and Michael Burgess. This legislation would direct the
Centers for Medicare and Medicaid Services (CMS) to create a Medicaid demonstration program to improve access
to comprehensive, high-quality, outpatient care — including clinical and support services — for individuals with sickle
cell disease (SCD).
• Ahead of World Sickle Cell Awareness Day on June 19, 2022, U.S. Senators Chris Van Hollen and Cory Booker
introduced the Sickle Cell Care Expansion Act to improve access to medical treatment and quality of life for
people suffering from Sickle Cell Disease (SCD).
• The Sickle Cell Disease Treatment Centers Act, introduced in September 2022 by Senators Chris Van Hollen
and Cory Booker and Representatives Barbara Lee and Danny Davis, seeks to close the gaps in care for people
living with sickle cell disease. The bill establishes a new $535 million annual grant program to provide federal
funding opportunities for hospitals with current SCD programs to expand their services to community health and
outpatient centers to help address the shortage of comprehensive treatment centers so patients can access care and
other services closer to their homes.
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