,,iii #aaith ,,congress #b;d ,session ,s4 ,,res4 #ghj ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,june #ah1 #bjbf,mr4 ,booker 7for himself and ,mr4 ,van ,hollen7 submitted the following resolution2 which was referred to the ,committee on ,foreign ,relations ,,resolution ,expressing support for the designation of ,june #ai1 #bjbf1 as ,world ,sickle ,cell ,awareness ,day in order to increase public awareness across the ,united ,states and global community about sickle cell disease and the continued need for empirical research1 early detection screenings1 novel effective treatments leading to a cure1 and preventative care programs with respect to complications from sickle cell anemia and conditions relating to sickle cell disease4 ,whereas sickle cell disease 7referred to in this preamble as ,,scd7 is a group of inherited red blood cell disorders1 a genetic condition present at birth1 and a major health problem in the ,united ,states and worldwide2 ,whereas the #bjbf theme of ,world ,sickle ,cell ,awareness ,day1 ,closing the ,survival ,gap3 ,equity in ,sickle ,cell ,disease1 is an immediate call to close the survival gap and push towards a universal cure2 ,whereas1 in #aigb1 ,dr4 ,charles ,whitten cofounded the ,sickle ,cell ,disease ,association of ,america to improve research1 education1 and health care for ,,scd patients and which is now headquartered in ,hanover1 ,maryland2 ,whereas1 in #aigb1 ,congress passed the ,national ,sickle ,cell ,anemia ,control ,act 7,public ,law #ib-bid2 #hf ,stat4 #acf71 which1 for the first time1 provided authority to establish education1 information1 screening1 testing1 counseling1 research1 and treatment programs for ,,scd2 ,whereas sickle cell trait 7referred to in this preamble as ,,sct7 is a gene mutation that causes a single misspelling in the ,,dna instructions for hemoglobin1 a protein that aids in carrying oxygen in the blood1 and can result in chronic complications for individuals living with ,,scd1 including anemia1 stroke1 infections1 organ failure1 tissue damage1 intense periods of pain referred to as vaso-occulsive crises1 and even premature death2 ,whereas ,,sct occurs when an individual inherits #a copy of the sickle cell gene from #a parent1 and1 although most individuals who have ,,sct live normal lives1 when both parents have ,,sct1 there is a #be percent chance that any of their children will have ,,scd2 ,whereas there are an estimated #a1jjj1jjj to #c1jjj1jjj individuals with ,,sct in the ,united ,states1 with many unaware of their status2 ,whereas approximately #ajj1jjj individuals have ,,scd in the ,united ,states1 with #a out of every #cfe ,african-,american births and #a out of every #af1cjj ,hispanic-,american births resulting in ,,scd1 and nearly #a out of #ac ,african-,american babies are born with ,,sct2 ,whereas ,,scd affects millions of individuals throughout the world1 especially individuals of genetic descent from certain countries in sub-,saharan ,africa1 ,south and ,central ,america1 ,saudi ,arabia1 ,india1 and the ,mediterranean basin2 ,whereas the variance relating to the prevalence of ,,sct ranges greatly by region and demography1 with overall rates as high as #dj percent in parts of ,africa2 ,whereas approximately #a1jjj children in ,africa are born with ,,scd each day1 #ej to #hj percent of whom will die before their fifth birthday2 ,whereas1 in #bjjf1 the ,world ,health ,assembly passed a resolution1 adopted by the ,united ,nations in #bjji1 recognizing ,,scd as a public health priority with a call to action for each country to implement measures to tackle the disease1 and in #bjaj1 the ,world ,health ,assembly passed a resolution relating to preventing and managing birth defects1 including ,,scd2 ,whereas screening newborns for ,,scd is a crucial first step for families to obtain a timely diagnosis1 to obtain comprehensive care1 and to decrease the mortality rate for children with respect to ,,scd2 ,whereas1 in #bjbc1 hematopoietic stem cell transplantation 7commonly known as ,,hsct or bone marrow transplant7 was the only cure for ,,scd1 and the ,food and ,drug ,administration has since approved #b gene therapies that have been demonstrated to cure ,,scd2 ,whereas there is an immediate need for lifesaving therapeutics that can improve the duration and quality of life for individuals with ,,scd2 ,whereas1 in #bjbj1 the ,national ,academies of ,sciences1 ,engineering1 and ,medicine developed a comprehensive strategic plan and blueprint for action to address ,,scd1 which highlights the need to develop new innovative therapies and to address barriers to the equitable access of approved treatments2 ,whereas1 in #bjbj1 the ,department of ,health and ,human ,services1 in partnership with the ,american ,society of ,hematology and the ,sickle,in,africa ,consortium1 and in collaboration with the ,world ,health ,organization1 hosted a webinar for a joint effort to strengthen efforts to combat ,,scd during the ,,covid-#ai pandemic and beyond2 ,whereas the late ,kwaku ,ohene-,frempong1 ,m4,d41 ,professor ,emeritus of ,pediatrics at the ,perelman ,school of ,medicine at the ,university of ,pennsylvania and ,american ,society of ,hematology member who founded and served as a member of the ,global ,sickle ,cell ,disease ,network1 was a leader in advancing the body of knowledge in ,,scd research1 public health1 and medicine and is recognized as immeasurably benefitting thousands of children worldwide2 and ,whereas1 although ,june #ai1 #bjbf1 has been designated as ,world ,sickle ,cell ,awareness ,day to increase public awareness across the ,united ,states and global community about ,,scd1 there remains a continued need for empirical research1 early detection screenings1 novel effective treatments leading to a cure1 and preventative care programs with respect to complications from sickle cell anemia and conditions relating to ,,scd3 ,now1 therefore1 be it ,that the ,senate-- 7#a7 supports the goals and ideals of ,world ,sickle ,cell ,awareness ,day2 7#b7 commits to ensuring equitable access to new sickle cell disease 7referred to in this resolution as ,,scd7 treatments by shining the light among all economic1 racial1 and ethnic groups to improve health outcomes for individuals living with ,,scd2 7#c7 calls on the ,department of ,health and ,human ,services to create global policy solutions aimed at providing support for the global community with respect to ,,scd and1 in partnership with local governments1 the domestic resources needed to provide access to newborn screening programs1 therapeutic interventions1 and support services with respect to ,,scd2 7#d7 supports eliminating barriers to equitable access to innovative ,,scd therapies1 including cell1 gene1 and gene-editing therapies in the ,medicare and ,medicaid systems for the most vulnerable patients2 7#e7 encourages the people of the ,united ,states and the world to hold appropriate programs1 events1 and activities on ,world ,sickle ,cell ,awareness ,day to raise public awareness of ,,scd traits1 preventative-care programs1 treatments1 and other patient services for those suffering from ,,scd1 complications from ,,scd1 and conditions relating to ,,scd2 7#f7 encourages the ,president to form a ,sickle ,cell ,disease ,interagency ,group1 which should include the ,department of ,health and ,human ,services1 the ,department of ,veterans ,affairs1 the ,national ,institute of ,health1 the ,food and ,drug ,administration1 and the ,centers for ,medicare ,medicaid ,services1 to work toward policies that will support equitable and appropriate access to innovative ,,scd therapies2 and 7#g7 with respect to the policies described in paragraph 7#f71 urges the interagency group described in that paragraph to consider options that not only address access to potential future curative treatments for ,,scd1 but also address the biases that the populations most affected by ,,scd continue to face within the ,united ,states and global healthcare systems4