•HRES 1176 IH 
Whereas newborn screening for SCD is a crucial first step for 
families to obtain a timely diagnosis and the establish-
ment of comprehensive care, which in turn helps to de-
crease mortality and morbidity for higher survival rates 
in children; 
Whereas approved treatments for SCD remain few in number 
with only four Food and Drug Administration-approved 
therapies since 2017, and there is a robust SCD pipeline 
with over 40 therapies in development; 
Whereas considering the impact of this molecular disease that 
results in the suffering of patients as well as their fami-
lies living with SCD, there is an immediate need for life- 
saving therapeutics that can improve the duration and 
quality of patients lives; 
Whereas, in 2020, the National Academies of Science, Engi-
neering, and Medicine (NASEM) developed a comprehen-
sive Strategic Plan and Blueprint for Action to Address 
Sickle Cell Disease, which cited the need for new innova-
tive therapies as well as to address barriers that may im-
pact delivery and access to approved treatments; 
Whereas, in 2020, the Department of Health and Human 
Services, in partnership with the American Society of He-
matology and SickleInAfrica, in collaboration with the 
World Health Organization, hosted a webinar for a joint 
effort to strengthen SCD efforts during the coronavirus 
disease (COVID–19) pandemic and beyond; 
Whereas American Society of Hematology member and re-
cently deceased Kwaku Ohene-Frempong, M.D., Pro-
fessor Emeritus of Pediatrics at the Perelman School of 
Medicine at the University of Pennsylvania, who served 
on the Global Coalition on SCD, has been a leader in ad-
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•HRES 1176 IH 
vancing the body of knowledge in SCD research, public 
health, and medicine, and is recognized as immeasurably 
benefitting thousands of children worldwide; 
Whereas there are emerging genetic therapy technologies, in-
cluding gene editing, that can modify a patient’s own 
hematopoietic stem cells with the goal of the patient 
being able to generate healthy red blood cells to prevent 
sickle cell crises; 
Whereas while hematopoietic stem cell transplantation (com-
monly known as ‘‘HSCT’’) is currently the only cure for 
SCD, and while advances in treating the associated com-
plications of SCD have occurred, more research is needed 
to find widely available treatments and cures to help indi-
viduals with SCD; and 
Whereas June 19, 2022, has been designated ‘‘World Sickle 
Cell Awareness Day’’ to increase public alertness across 
the United States and global community about sickle cell 
disease, the continued need for empirical research, early 
detection screenings for sickle cell disease trait carriers, 
novel effective treatments leading to a cure, and prevent-
ative-care programs with respect to complications from 
sickle cell anemia and conditions related to sickle cell dis-
ease: Now, therefore, be it 
Resolved, That the House of Representatives— 
(1) supports the goals and ideals of World Sick-
le Cell Awareness Day; 
(2) commits to ensuring equitable access by 
shining the light among economic, racial, and ethnic 
groups to new treatments in order to improve health 
outcomes for those living with sickle cell disease; 
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•HRES 1176 IH 
(3) calls on the Department of Health and 
Human Services to create global policy solutions 
aimed at providing support for the global community 
and at-home resources needed to provide access to 
newborn screening programs, therapeutic interven-
tions, and support services in partnership with local 
governments with the needed infrastructure for re-
search and treatment; 
(4) supports eliminating barriers to equitable 
access for innovative sickle cell disease therapies, in-
cluding cell, gene, and gene-editing therapies in the 
Medicare and Medicaid systems for patients who 
need them most; 
(5) encourages the people of the United States 
and globally to hold appropriate programs, events, 
and activities on Sickle Cell Awareness Day to raise 
public awareness of their sickle cell disease trait, 
preventative-care programs, treatments, and other 
patient services for those suffering from sickle cell 
disease, complications from sickle cell disease, and 
conditions related to sickle cell disease; and 
(6) encourages the President of the United 
States to form a Sickle Cell Disease Interagency 
Cabinet, which would be convened by the White 
House, bringing together departments and Federal 
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•HRES 1176 IH 
agencies across Government to address sickle cell 
disease on multiple fronts, which would include, but 
are not limited to, the Department of Health and 
Human Services, Department of Veterans Affairs, 
National Institutes of Health, Food and Drug Ad-
ministration, and Centers for Medicare & Medicaid 
Services to begin working toward policies that will 
support equitable and appropriate access to innova-
tive SCD therapies, and in this regard, the House 
of Representatives urges that the options to be con-
sidered not only address access to potential future 
curative treatments, but also address the bias that 
this population continues to face within both the 
United States and global health care systems. 
Æ 
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